Dining With Goldilocks

Peas? Really?

2011-07-25T20:21:00.000-07:00

This should be short because I'm not sure what to make of it yet. Georgia has started occasionally complaining that eating peas makes her mouth itch.

What? Please, no. Peas, like peanuts, are a legume, so it's not totally unheard of for people with a peanut allergy to also be allergic to other legumes like peas and beans. But Georgia did a food challenge for green peas at her allergist's office nearly 3 years ago and passed. She's been happily eating peas with no problem ever since. (Yes, I know from experience that food allergies can crop up at any time, but still, it's harder for me to accept that that is what's happening here.)

Oddly, she likes to eat her frozen veggies straight out of the freezer sometimes (hey, it's easier for me as the chef, so I'm not gonna deny her that request), and she has told me that her mouth doesn't itch when she eats the peas frozen.

For now, I haven't cut them out of her diet, because I'm still trying to figure out if this is all real or not. Of course we take potential allergies seriously around here, but at age 3, she's not always the most reliable reporter and has been known to put on academy award worthy performances sometimes. So, we're keeping an eye on her pea intake and will ask the allergist about it at her next appointment.

Allergy Dad Confession: Cookie

2011-07-11T12:09:00.000-07:00

Okay, that post title is a misnomer, because it's not really a confession when someone else is doing it for you. I think it's more like tattling. Whatever.

Georgia's preschool teacher sent her home with a homemade star-shaped cookie to celebrate the 4th of July. (Aside: people often do not get it why allergic folks are so wary of others' home baked goods. I know they mean well. I'm sure the teacher, who of course knows of Georgia's allergies, gave it to her thinking that it was safe. I'm guessing she'd be surprised and not totally get it if she heard that we still wouldn't let Georgia eat that thing. I'm just glad and amazed that in this instance Georgia didn't immediately gobble it up.)

Anyway, the point of the story is that not knowing more about the ingredients or the cross contamination risk from this woman's kitchen, we did not allow Georgia to eat the cookie and instead threw it out, or so I thought, but then I later found my husband standing at his dresser munching on it. You little devil, you! I guess he just can't let a good cookie go to waste!

Are Food Allergies Funny?

2011-05-24T13:17:00.000-07:00

I know that post title makes it sound like I'm about to go off on a diatribe about how food allergies are not funny, but I honestly mean the question sincerely and would be very curious to hear your thoughts, especially if you (or your child) do not have food allergies. I am always interested to hear the viewpoint of people not so immersed in the allergy world as I am.

I've noticed that it's apparently okay in popular culture to poke a little fun at food allergies. This recent post over at Dooce, (which largely has nothing to do with food allergies), just reminded me of the topic. Clearly, she wasn't trying to offend people with food allergies, she was just trying to make her point in a humorous way by poking a little fun at herself.

I can also think off the top of my head of episodes of The Office, 30 Rock, and Modern Family that have all incorporated food allergies as part of the plot within the last two years. Being sitcoms, the situations shown are meant to be funny of course, but I find myself clenching up and having trouble appreciating the humor. I literally sit there having an internal dialogue with myself going, "Kate. Do not be so uptight. It is just a joke, for crying out loud." And in the category of "any press is good press," one could argue that even poorly portrayed images of food allergies raise food allergy awareness amongst the general public. (I'm not so sure I agree with that theory in this case, but I'm just throwing it out there. In my opinion, a truly inaccurate portrayal of food allergies can do a real disservice to people dealing with them. For example, a portrayal of a buffoon with a fake food allergy might fuel doubts about whether other people's properly diagnosed food allergies are real.)

Anyway, I'm mostly not offended by sitcom portrayals of food allergies, or people using food allergies in jokes, I guess, because I have to admit, it does just go to show that with food allergies on the rise, they are much more a part of the viewing public's consciousness than they would have been 5, 10 or 15 years ago. And that apparently makes food allergies acceptable fodder for comedy.

The more uptight part of me has to wonder, though: would it be okay to poke fun at someone with cancer, diabetes, autism, or some other affliction in the same way? Would the viewing audience find it as funny? Why are food allergies so funny? Sadly, I think it's because a lot of people secretly find it sort of annoying to have to be bothered by the food allergies of those around them, so jokes are a way to let off steam about that.

I don't know. Those are just some ideas I've been pondering. What do you think?

I do believe that in life it's critically important (regardless of the situation) to retain some ability to laugh at ourselves. So I'm really striving to foster the part of me that is not offended by attempts to humorously portray food allergies, and to tone down the part of me that is admittedly still a little uptight about it. It's all about finding the right balance, I guess.

I have no idea what just happened there

2011-05-10T14:42:00.000-07:00

Well, that's not completely true. In retrospect, we're pretty sure that this was "merely" a contact reaction.

Wait, let me back up and start over from the beginning. We went to Florida on vacation. We stayed in a condo and ate most of our meals in. We didn't want to be total party poopers, so we tried venturing to a restaurant with the kids. And as luck would have it, Georgia somehow broke out into a pretty bad case of hives at the table....BEFORE OUR FOOD WAS EVEN SERVED.

Grrrr. What the hell? I mean, seriously, is this a joke? Can we now not even safely set foot in a restaurant?

I guess we will never know for sure what happened, but our best guess is that she brushed up against something on the table and then touched her face, or that some kind of food residue was left on one of the communal crayons in the crayon bucket that Georgia had started using while we were waiting to be served. For a while there, Joe and I had some fears that this incident might indicate that Georgia is now so allergic to fish that the mere presence of fish "fumes" in the restaurant was enough to set off this reaction. However, we've thankfully since proven that theory invalid, by getting back on the horse so to speak and venturing to a restaurant as a family again four days later -- a heavily seafood oriented one at that. (They're a bit hard to avoid when you're staying on an island.) So, it's probably more likely that it was peanut butter or nut residue of some sort on the table, chair or crayons, I'm guessing.

Anyway, a few more details on what happened:

-Georgia went from totally fine, to "Gee, honey, does her face look a bit splotchy to you?", to "Um, she's clawing at her face now..." in a matter of about 2 minutes.

-We gave her some Benadryl but then realized it was boiling hot from having accidentally been left in the car all day. Not being certain whether the active ingredient would still be effective, we didn't want to take any chances. We bolted from the restaurant, (my parents stayed behind to pay and take the food to go), and then our little family sped around the island stopping at four different convenience/grocery/pharmacy stores before finding a fresh bottle of liquid Benadryl for sale. (Just picture 6 months pregnant me, sprinting in and out of each establishment in pursuit of relief for Georgia.)

-I don't know if these were "bad" hives comparatively speaking, but they were certainly the worst case Georgia has ever had. Her face was the worst and continued to blow up a bit as we drove around, and the hives spread to her neck, shoulders and arms - but not nearly as bad as on her face. Her eyes were extremely puffy, especially underneath. I'm not sure the photos I took show any of it very well.

-Joe maintains a "fake calm" front for Georgia when this stuff happens, but man oh man, does he get tense!

-I was anxious and worried watching the hives spread, but not too panicked because I could see that she was breathing fine, and had no swelling of her lips or tongue. Also, we had the Epipens at the ready if things had taken a turn for the worse. (Thank God that did not happen!)

In the end, the Benadryl kicked in, the hives subsided, and all was well. Georgia took a shower back at the condo just to be safe, ate a makeshift dinner, and went to bed. (We later woke her for 1 more dose of Benadryl, just in case. Oddly, we found her out of bed, sleeping face down on the plush carpeted floor! I wonder if that was total coincidence, or if the Benadryl made her a bit loopy?)

So, that's it, but I think this little incident illustrates two things very well:

1) When dealing with a three year old, food allergies are often harder on the parents than the kid. Sorry if that sounds rude or self-centered, but in our experience, Georgia (at this age) doesn't get too upset about foods she can't have. Also, almost all responsibility for what she eats or doesn't eat falls on our shoulders and not hers. She's not even as mentally affected by her reactions as we are while she is having them. She's complaining of the itch, while we're worried that something life threatening is going on. (In the midst of this reaction, she looked down at her arms and said, "Well, the good news is that at least I don't have hives on my face!" I just laughed and said, "Oh, sweetie. If only you could see a mirror.")

2) Sometimes the eventual outcome doesn't paint a full picture (to friends/relatives/third parties) of what it feels like to witness your child having a reaction, or how it can continue to affect you afterwards as a parent. I'm sure that could be said for any type of accident, disease or medical situation involving one's own children, but what I'm getting at is the idea that this reaction can be boiled down to: she touched something, she had some Benadryl, she was fine! And I realize that the "she was fine" part is the most important. But while it's happening? Your blood pressure skyrockets. Your brain wonders "what if?" You blame yourself for having not wiped the table, or for having left the Benadryl in the car, or for whatever else you might come up with. And then afterwards, you're relieved that she's fine but find yourself wondering, "Is it even worth it to go to restaurants?" followed by, "But geez, she can't live her life in a bubble." Then you find yourself on the plane trip home 5 days later thinking, "Oh holy crap, what would I do, and how would I feel, if she had that same kind of "minor" contact reaction right here, in this confined space flying through the air?" (I really tried to put that thought out of my mind, but it did creep in there from time to time as I reprimanded Georgia for senseless (but totally normal for a three year old) behaviors, like putting part of the seatbelt in her mouth.

So, I guess that's it. None of Georgia's reactions (or our responses to the reactions) ever seem to go down "by the book", and we always learn something new. This time it was don't leave the Benadryl in the 90+ degree heat all day, and maybe wipe down your surroundings and don't use communal crayons. On that note, I think we've officially become "one of those" wiping families. Great. Which makes me feel a bit ridiculous, because it's not like you're going to wipe down every bathroom doorknob, or salt shaker, etc., wherever you go -- it's impossible to clean the whole world around you, so wiping any of it seems slightly pointless. On the other hand, once you've witnessed stuff like this happening to your child, suddenly it seems like a really good idea to not use those crayons, to wipe off her chair, and to clean her tray table and arm rests on the plane. (Side note about airplanes: you might recall our interesting encounter with Peanuts on a Plane from last year. This time I made sure to dress Georgia in long sleeves, pants, socks and tennis shoes just to minimize the chances of contact.)

Here are some pictures that I don't feel too bad about posting, though they break my heart a little. (One day I'll ask her permission, but she's still young enough right now that I think she'll look back on these and laugh, and not get mad at her mom for posting unflattering pictures. Besides, she's still cute as a button to me, even with hives.)

Before:
(Clear picture of her face from earlier in the day.)

Gratuitous "before" shots from the restaurant, while we waited outside for a table:

(That's her Pop Pop's pink lemonade, the only thing she consumed. An unlikely culprit. And we did confirm that Pop Pop hadn't been eating anything that day that would have caused a cross-contamination problem on the shared straw.)

(Doesn't everyone look so relaxed?)

Okay, and now for the "during" shots. These were not taken at the height of the episode, but after things started to subside a bit. The lighting conditions were bad, (or my photography skills were), so I'm not sure these photos do justice to the puffiness under her eyes.

And finally, a couple of photographs taken about 24 hours later. You can see lingering after effects of the hives. (Is that typical? Her forehead had tiny bumps that looked almost like itty bitty acne for the next several days.)

(It's hard to tell, but can you see the swath of redness running underneath her eye?)

One more gratuitous photo for good measure, my sweet girl sucking fingers as she always does to relax or go to sleep. As you can see, she's no worse for wear:

Love her.

Clear as mud

2011-04-15T14:24:00.000-07:00

As much as I tried to put the most positive spin on our E.R. trip in the last post, Joe and I realized after having a few days to let it soak in that the experience left us with a lot of unanswered questions. I've since had another conversation with the allergist to clear up some of our confusion, so I thought I'd share the additional insight. (And here's where I again have to remind you that you shouldn't take any of this as more than a fun anecdote. You really can't apply our doctor's medical advice to your own situation, because it might not be apples to apples.) Okay, lawyerly disclaimer over.

And now for a side story. Part of our confusion came from the fact that, completely unrelated to food allergies or this weekend's incident, about 48 hours after our E.R. trip, Georgia ended up seeing a pediatrician regarding an ear infection that she had last month. When the E.R. trip came up in conversation, this pediatrician seemed shocked that the hospital had not followed "protocol" for response to an allergic reaction, and had not directed us to continue giving Benadryl after we went home. During the course of this conversation she exclaimed, "That was a life threatening situation!" Though I was not present at the appointment, Joe assures me he gave the doc a strong stink-eye implying, "Hey, lady, could we please not discuss all things 'life threatening' in front of my impressionable young daughter!" Still, though, it got us to re-evaluating Georgia's reaction.

So, what really happened Sunday night? Was it anaphylaxis? Should we have given the Epipen? Should the hospital have done anything differently? Should we have continued giving Benadryl? When are we out of the woods with respect to any reaction? These are the types of questions we had swirling in our heads.

Here are some (paraphrased) answers:

1) The allergist made us feel better by assuring us that we were understandably confused in the heat of the moment (and afterwards), because this was not a "typical" reaction.

2) She was not surprised by how the hospital treated us and thinks we likely would've gotten the same treatment at most area hospitals. As she put it, in her experience, if you do not have hives, they simply have a hard time believing that you are having an allergic reaction. (Never mind the fact that all literature on the subject indicates that hives need not be present; I think it's just a case of lack of familiarity and E.R. docs having to rely on knowledge of the most typical cases, not to mention juggling all manner of various maladies on any given night.)

3) After Georgia initially recovered from the reaction, we should have continued giving her Benadryl every 4-6 hours for the next 24 hours to make sure that everything stayed under control and that a biphasic reaction did not occur. So, we blew that one! (As did the hospital.) Joe did, however, end up sleeping in the same bed with Georgia that night, just to put our minds at ease, so I don't feel too bad about our flub.

4) Had we spoken to the allergist about 20 minutes earlier, while Georgia was still vomiting in rapid succession, the allergist likely would've advised that we inject the Epipen. She said that is what she usually recommends when internal symptoms (like vomiting, or swelling of the tongue) are occurring. She prefers to err on the side of caution and says it would never be "wrong" to use the Epipen, because it will not hurt Georgia. In this particular case, she said it would have stopped the vomiting and made her feel better. However, by the time we spoke to the allergist in the midst of dealing with this reaction, Georgia had at least temporarily stopped vomiting and had fallen asleep in the car, plus we were not far from a hospital, which is why the allergist did not advise us to inject the Epipen.

It's all so weird, isn't it? I mean, once you have the benefit of hindsight and knowing that everything turned out JUST FINE, it sounds ridiculous to have considered injecting the Epipen, because that's just a much more dramatic thing to do. For starters, it would mean immediately calling 9-1-1, arriving in an ambulance, and likely staying overnight in the hospital. Not to mention the fact that it would probably totally freak Georgia out (which I'm all for if it means saving her life, but generally against if it's not necessary).

But the problem is, you don't know until afterwards that, yeah, things will turn out just fine without the Epipen, and if you need it and wait, it can be too late! Which is why the allergist says when in doubt, use it.

I just feel funny knowing that there have now been two reactions where maybe we should've used the Epipen but didn't. (And then at the same time, with the benefit of hindsight and knowing that she recovered fully without the Epipen, there's a part of me that's glad we didn't inject the Epipen. Is that bad?) I am certainly not trying to take chances with her health in these situations, I'm just saying we've gotten very lucky in the past, but this is all a good reminder that one cannot count on "luck" during future allergic reactions. In short, better safe than sorry.

5) Does it even matter if it was anaphylaxis? What is the point of labeling the type of reaction? I don't know. To us it was just a point of curiosity, wanting to understand Georgia's allergies better, wanting to know if we should've used the Epipen, and wanting to know how "serious" her reaction was. (Also, we were confused by the list of "types of reactions" on FAAN's website, trying to fit Georgia's experience into one of their categories.) The response from the allergist was that, again, this was a confusing, atypical reaction, and we may have hit on a gray area where even she can't fully describe the reaction. It was not "just hives" because it included internal symptoms and no hives. She said certainly it had "anaphylactic potential" if it was not actual anaphylaxis. If her blood pressure had dropped, then it would be deemed anaphylaxis without question. But Georgia's blood pressure measured just fine by the time we were at the hospital. Could a BP drop be what caused her to so easily fall asleep on the couch or to pass out asleep in the car on the way to the hospital? I hope not but guess we'll never know. So if I understand it right, hives alone would not be anaphylactic, hives + vomiting would be anaphylactic, vomiting + blood pressure drop (or just about any symptom + blood pressure drop) would be anaphylacitc, but vomiting without the blood pressure drop = not anaphylactcic probabaly, but "anaphylactic potential." (Whew! What a mess! And maybe it doesn't even matter from a practical standpoint, but I thought I'd share, for what it's worth.)

So, there you go. We've learned a lot, but I'm also amazed at how unclear all this allergy stuff is to me. I mean, I don't consider myself to be on the uneducated end of the spectrum. I write a blog about food allergies (albeit mostly about personal experiences, not research) and read about them frequently. And yet navigating food choices everyday, and handling a reaction when it happens still feels much more like an art than a science to me. It's all just a collection of individual choices guided by medical advice, but not clearly black and white.

A Little Scare

2011-04-11T11:32:00.000-07:00

Well, I guess it was bound to happen someday. We had our first allergy-related trip to the E.R. But don't worry - everyone's fine!

Georgia had a very delayed reaction (think: 4-5 hours after ingestion), consisting primarily of vomiting, after eating about a slice and a half of sandwich bread containing tree nuts. She took Benadryl and was later given an anti-nausea pill at the hospital, but at no point did we have to inject the Epipen. Our allergist recommended over the phone that we go straight to the closest E.R., so we did.

This particular E.R. probably deals with more trauma injuries than pediatric allergy cases, so I'm not sure anyone there ever 100% believed that Georgia's symptoms were due to food allergy and not the flu, since she was not presenting the "classic" profile of allergic reaction symptoms including hives and airway restriction. (But I saw my little girl playing hard all afternoon, and I saw her waking up as happy as a clam again this morning, so I don't think she just spontaneously came down with the flu yesterday at 5 p.m. and then fully recovered by 11 p.m.)

Regardless, she is fine now, which we are all thankful for. That is what matters most. The silver lining here is that it was a great learning experience. So I thought I'd just focus on the positives and discuss some of the lessons we gleaned:

Now we know to give Benadryl once an allergen has been accidentally consumed, even if there are no symptoms yet, because it might help prevent a reaction from starting. (I feel like an idiot for not realizing that we should've done that until well after the fact.)

Now we'll have the allergist's phone number stored on our cell phones. We had no trouble looking it up online from where we were, but it dawned on us that that won't always be the case.

Now I will feel less weird about going to the hospital if we ever have to do this again. I'll be less hesitant to seek medical help.

This is a "data point" for Georgia. I know from talking to adult friends with food allergies that they have developed over the years an ability to know what's going on with their bodies. They probably wouldn't mistake a food allergy reaction for the flu, because they know the sensations of having an allergic reaction. So, for Georgia, this is just another data point to help her better understand her own body.

We weren't on vacation, but the next time we are, I'll look up where the closest hospital is and how to get there. (I've heard that tip 1,000 times but never thought much about it. I guess I figured we either wouldn't need a hospital or would be calling 9-1-1, but last night I realized that there is a middle ground type of reaction, during which it's helpful to know how to get to the hospital.)

The pendulum that swings from lax to vigilant in our house just swung back to vigilant. As much as we are all trying to avoid reactions, and accidents are kind of inevitable, there's nothing like a reaction to remind you that allergies are real.

Having been through the E.R. experience now, I think next time we'll just head to the closest hospital and let the chips fall where they may, instead of thinking ahead to the rest of the evening, or what hospital we'd like to get to (banking on the fact that Georgia is probably fine), or that kind of thing.

Joe would add that one lesson he learned was to pack a hospital "entertainment bag" for your one year old who will be up way past her bedtime. Yeah, that sounds nice, sweetie, but seriously, what are the chances we'll ever have such a thing at the ready when we really need it?

Seems that cell phones don't work in most medical buildings. Next time I'll know to tell concerned family members not to worry if they don't hear an update for a couple hours. Also, I have rid myself of the delusional belief that an E.R. visit can be accomplished in thirty minutes or less. : )

Last valuable lesson: if you walk into triage and promptly throw-up into their trash can, you will be admitted faster. (True, but I'm just kidding about that being a "lesson".)

So, given the probability that an E.R. trip was going to be on our agenda someday anyway (sorry, just being a realist), how great is it that we were able to figure out all of these things in the midst of this reaction instead of a more severe one?

Other positives/funny stories:

June of course sprung a diaper leak while we were there, so Joe was covered in multiple bodily fluids. We did have a back-up diaper on hand, but no extra clothes, so June spent the rest of the evening charming the hospital staff mostly naked.

During a fussy toddler moment, some guy followed by two cops walked by, and Joe urgently said to me, "Video! Something that takes video! A camera phone, I don't know - something, anything!" I immediately started scrambling through our bags looking for a recording device, not understanding what he so urgently needed to record, thinking that it related to the guy or the cops. Turns out he was just hoping we had some sort of on-screen entertainment available for June. Ohhhhhhhhhhhhh.....now I get it.

I let the girls play with surgical gloves, but Georgia quickly and furtively shoved them back at me the moment the physician opened the curtain, because she thought she'd be in trouble for using them. (Maybe you had to be there, but it was really hysterical.)

We let June eat half of the Pedialyte popsicle that Georgia was given. (Georgia had to keep it down before they'd let us leave.) What can I say? By that point, we were convinced Georgia was fine, desperate to leave faster, and out of ways to keep June pacified.

We love our allergist! She responded quickly to the after-hours call, gave us clear advice, called ahead to the hospital to let them know that we were on our way in (not that that made any difference, but still, a nice touch!), and then called me this morning to see how Georgia was doing. Love her.

Yeah, I took some pictures. Why not? What else you gonna do when stuck in cramped quarters with your family doing a whole lot of hurry up and wait?

Just a little follow up

2011-04-07T21:08:00.000-07:00

Since my last post was kind of a rant, I felt like I should update this blog to reflect that I think we've got everything worked out with Georgia's preschool now. I had a phone conversation with the teacher in which she probably concluded that I'm a little paranoid (her quote: "Um, we ate tomatoes?"), but also managed to convince me that she "gets" it as far as the need to check all foods, the concern for cross contamination, and so on and so forth. We left it that Georgia will continue to bring her own lunch, but will be allowed to eat some of the school's food so long as on any given day the teachers tell her it's safe.

Surprises:
1) I'm surprised that this is where we've ended up, that is, that I even feel comfortable letting Georgia eat ANY of the school's food, given that my generally held belief is that the risk isn't worth the reward, and that classrooms should be a food-free safe haven.
2) I'm surprised that the school/teachers even want the onus to be on them as far as telling Georgia "yes, you can eat it" or "no, you can't." It seems most schools are so afraid of potential liability that they wouldn't touch this issue with a ten foot pole and would prefer to have the parent make the call in every case.

What's playing into this:
1) It's a Montessori preschool, so the serving of food is not just about nourishment, but also about having the children work on a practical skill and share a communal experience. (Or something like that.)
2) I'd be more willing to say "screw the skill/communal experience" except for the fact that Georgia's been so hesitant to get involved in ANY group activities with other children, but her teacher reports that Georgia really likes the meal-prep part of the day, so I am loathe to take that little shred of participation away from her. For the sake of her social development, as parents we're kind of trying to latch on to something she likes and go with it here.
3) The foods in question are very basic, like last week they peeled oranges or bananas, and the week before that I think they made a salad of lettuce and tomatoes. I'd feel more comfortable if someone could give me an actual menu ahead of time, but I guess the teacher has persuaded me to relax and trust her that the foods she's talking about incorporating aren't going to be a problem. The fact that so far they have not been processed foods makes it less worrisome to me from an allergy perspective; I hope it stays that way.

This is fixable. But GRRRRRR I am so mad!

2011-03-30T19:18:00.000-07:00

If I had written this post six hours ago, it would've been filled with profanities, so let's all be happy that I didn't have time until now.

Here's the short, cut to the chase version of the story:
Georgia started a new (one day a week) drop-off preschool program today where lunch is served. (God forbid the children go more than an hour and a half without eating, but I digress.) We spoke to the teacher about her allergies beforehand and sent her off to school with her own brown bag lunch. She comes home reporting that "she ate some of the school's food" because they told her it was okay because "nothing they serve has peanuts in it."

Ugh. This is beyond aggravating. There was obviously some kind of miscommunication between us and the teacher. We'll fix it. And no one was hurt, and nothing went wrong, so yeah, I've calmed down (a little) now.

But I was majorly annoyed because:

1) Food allergies suck. Our daughter has had trouble transitioning to a school setting (or any group activity away from mommy and daddy for that matter), so I would really rather have everyone's focus at the school be on her social/emotional development, and how she's doing, and what we can all do to help her feel more comfortable and less anxious, but instead, nearly all of our conversations with the school thus far have been about freakin' FOOD. And I feel I have no choice in that matter, because her health and safety is paramount. But I hate it that it's Day 1 and we're probably already becoming "those food allergy parents" in the teacher's mind, plus I could hardly even focus on the positives of how Georgia's first day went, because it was all overshadowed by dealing with this food mess.

2) I'm p.o.'d that the teacher undercut our instructions to our own daughter, although I'm sure it was unintentional on their part, and thankfully, Georgia was pretty much unphased by the whole thing. Still, how confusing must it be for her when mommy and daddy send her off with a packed lunch and tell her not to eat the school's food, and then her teacher tells her the complete opposite? She's only 3, can't read, and has to rely on adults to protect her, so it's not helpful to send her mixed messages.

3) Grrr...peanuts, peanuts, peanuts. Yeah, yeah, it's so great that there's a lot of peanut allergy awareness out there now. But I've got two beefs about it. One, it gives people a false sense of security and confidence, so they say things like, "this food is peanut free!" and forget to read labels, or think about cross contamination or how the food was processed or cooked. Two, I think peanut allergy awareness is causing people to space out about OTHER allergies. Georgia's allergic to four kinds of food, so please don't give her the wrong idea by handing her something and saying, "You can eat it, because it doesn't have peanuts." In this particular instance, I'd be more forgiving of it as an innocent mistake if my husband hadn't already explicitly discussed Georgia's multiple food allergies with the teacher beforehand, and if we hadn't been required by the school to submit medication authorization forms and a food allergy action plan signed by her doctor.

So there you go. Just had to vent. I feel better now. We'll get it all worked out super tactfully and amicably with the school by next week I'm sure.

Friendly reminder/PSA

2011-03-29T09:54:00.000-07:00

This PSA is for:
1) myself;
2) our relatives;
3) the friends and strangers who ask us if Georgia's allergies are "severe";
4) the parents I know who seem to take their children's allergies a little too casually in my opinion, assuming that [no bad reactions thus far] = [no bad reactions in the future].

I'm not trying to scare anybody, and God knows I hope my child's allergies are not severe. This is just a little reminder that unfortunately no one has any way of knowing.

(The following is an excerpt from a recent blog post I read on Food Allergy Mama):

Finally, I wanted to pass along an email a good friend of mine sent to her family members after a child in her daughter’s class suffered a severe reaction during a school field trip, and didn’t have their medication. I think it serves as a good reminder that you can never be vigilant enough….

I was in Springfield yesterday on a 5th grade field trip with Laney when one of her classmates had a allergic reaction to peanut butter. He is 11yrs. old and has never had a bad reaction before. His mom did not have her epipen with her. He was sitting next to a boy that had peanut butter and they think he somehow touched his hand or the table and was exposed. He started out with hives and then started coughing and his throat was closing up. We called 911 and they were there within minutes. I went in the ambulance to the hospital with the mom and child and they were able to get him the epipen, oxygen, etc… in time.

As you can imagine it was a very scary experience for everyone involved. I send this to you as a reminder that we need to carry Maddie’s epipen with us at all times, no exceptions. Yes, the chances of it happening to her are extremely rare but I would never want to be in that situation without it.

I asked him, after he was feeling better, what it felt like and he actually said he thought he was going to die or suffocate.. It was really sad and the fear in his eyes is not something easily forgotten.

Finally, everyone was hesitant to call 911, thinking that the benedryl he was given would kick in. Never wait, every second counts in these situation.

A Happy Moment

2011-03-23T10:19:00.000-07:00

After church, walking back from the bathroom, our route took us through a post-baptism celebration spread of delicious foods.

Donuts, pastries, cookies, and cake galor. Amidst it all, a plate of bananas and orange slices.

I did not say a word and figured we'd just walk right through (I'm not the most outgoing of creatures when it comes to the church setting), but Georgia immediately asked, "Can I have one of those bananas? Because we don't know if the cookies are safe."

Me: beaming with pride!
Georgia: happily eating a banana.

I know there may come a day as she gets older when it will bother her that others can eat things that she can't, but for now, I just think it's awesome that she really is starting to understand her food allergies, and that it doesn't phase her one bit. So I'm going to live in the present and try to enjoy happy moments like this one. Now, if only I could always do as good a job as she did of picking the healthy option for myself!

Explaining my Absence

2011-03-21T08:49:00.000-07:00

It's been a while since I updated this blog, so much so that I feel the need to explain my absence. Here's the answer: Don't take this the wrong way, but sometimes I just get bored of food allergies. (To the other food allergy sufferers or food allergy parents out there: do you?)

As a parent of a food allergic child, there's a certain amount of continuing education that must go on, or else you'll be totally out of touch with medical advances, legislative changes (that affect things like your child's school experience, or food labeling), etc. This is especially true because even the best allergists in my opinion do not equip patients and parents with all the information we need to get by; there is a lot of patient "self education" that we're left to take care of on our own. But on the other hand, my real goal is just to go about living my normal life, allowing my food-allergic child to go about living hers, not thinking about food allergies any more than we have to. So, while advocacy and education in the food allergy community is invaluable, it's also something I just have to step away from now and then. If I read (or write) too much about food allergies, it can have the effect of overwhelming me, or sometimes getting me down or just plain scared, rather than empowering me, which is supposed to be the intent.

Anyway, I also take my boredom with the subject of food allergies to be a good sign that our family has been very, very lucky in recent months. (knock on wood.) Only when you're not dealing with actual allergic reactions can you indulge in not focusing so much on food allergies. It seems almost paradoxical, but I think our vigilance has allowed us to be more relaxed. It's always a balancing act, though...I don't want the pendulum to swing from relaxed all the way over to lazy or careless. But I fully admit that a lack of reactions can have that effect; our family gets too comfortable and starts taking more chances, making more assumptions about food ingredients that we shouldn't.

(Oh, also, I'm pregnant, and that's such a good excuse for so many random things that I might as well put it forth here as another reason that updating this blog has not been top priority.) : )

So, had I had the urge to update this blog in the last few months, here are a few things I would've posted on: (skip this if you want....it's about to get really long as I brain-dump)

Ugh. The comments. When will I ever learn to NOT READ THE COMMENTS to allergy articles in main stream media? They are filled with hatred. I made the mistake of reading the comments to the December news of a Chicago Public School student's allergy related death. The allergy community stepped up with heartfelt responses and offers of support. But many others were screaming that the family was to blame, because they should've just homeschooled their child. I hear this sentiment a lot, but there's no winning. If you go out of your way to protect your food allergic child, then you are considered a zealous freak who needs to just relax and not make such a big deal of your child's allergies, who just needs to realize that allergic children can't grow up living in a bubble or they won't be prepared for living in the real world when they grow up, yada yada yada. But if you put them in public school, well then you're subject to potential shouts of "don't make your problem my problem" from other parents, or "you should've homeschooled" if something goes wrong. That's frustrating. With all due respect to families that for whatever reason have decided that homeschooling is the best option for their child, I do think that access to a public education and a safe classroom for my child is not too much to ask. The types of things I would even consider asking my child's elementary school to do in light of her food allergies are all (in my opinion) very "reasonable accommodations" under the ADA. If you can build a wheelchair ramp, offer a special ed class, and bring in a speech therapist, surely you can also keep my child's Epipen accessible, train teachers to use it, and consider keeping food in the cafeteria rather than the classroom?

There was this whole brouhaha about a district in Florida where parents protested food allergy accommodations that one family had requested. Honestly, I don't know enough about it to have a strong opinion, because I've been tuning out the news so I don't know what the family asked for exactly. But it was so bad that FAAN had to get involved to help educate the parent population and the school board, and suffice it to say that the sentiment coming from the protesters was not very compassionate (e.g., "My child is special too!"). Read all about it here if you want.

Back in December, the Wall Street Journal (amongst other publications) ran an article about the National Institute for Allergy and Infectious Diseases having issued the first clinical guidelines for diagnosing and treating food allergies. (Hello? It's about time.) It explained why relying on blood and skin tests alone is not sufficient. This was not news to me, and should not be news to anyone dealing directly with food allergies, but unfortunately I think it is. Too many doctors (generally speaking, pediatricians, as opposed to allergists) have not been properly educated about how to correctly identify food allergies, and this results in misdiagnosis and over-diagnosis, with families avoiding foods for no good reason. As someone who once had to put my daughter on an extrememly restrictive diet based on a simple blood test while we waited for two months to get an appointment with the allergist, I can certainly relate. Even after Georgia was seen by the allergist, she was left avoiding foods for quite some time that we were later able to add back into her diet. (Poppy seeds and green beans (all beans, for that matter) were once on our list. And they shouldn't have been. What a pain for us, and what a burden to put on others interacting with or caring for my child. I also felt it distracted from the significance of her real allergies to have all of these other foods coming on and off the list. How is someone supposed to trust me that she's really allergic to sesame, if just last week I told that same person "no beans!", but then turned around and said, "never mind"?) So, the article made some valid points, and I think the accompanying graphic did a good job of visually explaining the difference between proper and improper diagnostic procedures. Certainly there is still room for improvement in allergy testing, and I hope the scientists are working hard on that! The downside of the article (and similar articles covering the same topic) was that there was disproportionate focus on the false positives/over-diagnosis issue. Which only leads to more of the general public thinking, "food allergies aren't real," or, "is your daughter really allergic to nuts?" That sentiment gets annoying. For every person that asks me, "Why are there so many food allergies now, when no one I knew in the 70's had allergies?" I feel like half of them are genuinely curious with no ulterior motive, and the other half are secretly thinking, "I think a lot of these so-called allergies that people are being told they have are just fake. Are Georgia's fake?"

My in-laws successfully watched the girls at their house for 3 nights while Joe and I went on vacation, and the weekend passed without allergy incident! Woo-hoo! This was a big milestone for us as parents to cross. I hope we didn't annoy Joe's parents beforehand with too much information and instruction, but I warned them that we'll do it again every time. : ) I'm so glad it went well, because it helps us build trust (not just with them, but with ALL other caretakers), which is something that we have to be willing to do in order to give our daughter a normal life. But I'm not gonna lie - I was anxious about it beforehand. (Which, don't misunderstand - had absolutely nothing personally to do with my in-laws. I had complete confidence in them but was nervous nonetheless.)

I think that's enough for now! I hope I didn't bore you too much in the process, because I think I'll be writing here off and on more regularly for a while now that I've come off of this 3 month hiatus.

A Sobering Reminder...

2010-12-21T07:52:00.000-08:00

...that kids sometimes die from their food allergies. Ugh.

Full story here: Seventh-grader dies of food allergy at Chicago school

So tragically sad. I'd say I'm speechless, except there are countless thoughts swirling in my head, such as:

--it is stupid that all schools are equipped with defibrilators but not Epipens. At this point shouldn't Epipens be standard issue at all places hosting children, like camps, schools, airplanes, etc.? (I mean, I wouldn't personally want to solely rely on my child's school having an Epipen around rather than sending her own Epipen to school to be stored there, but still -- it seems there should be one there as a backup. What is the great harm we are trying to prevent here by NOT having extra Epipens around? Accidental injection? Overdose? Give me a break. The risk of potential death trumps that.)

--why does food have to be a part of SO, SO many school events in the first place? We wouldn't even have to get into the question of nut bans so much if food were just kept in the cafeteria at lunchtime. Kids deserve to have their classroom be a safe place for learning.

--Georgia has never had Chinese food. I view it as extremely high risk. I'd flip a lid if someone served her Chinese food at school. [EDITED TO ADD: I should clarify that I'm not blaming the teacher involved in this particular incident. I presume permission to eat the Chinese food was given by this girl's parents, but I have no idea. I just meant that as of right now I can't imagine ever feeling comfortable allowing Georgia to eat Chinese food at school, outside of my immediate supervision. But who knows, maybe I will feel differently about that when she's 13.]

--Georgia's preschool kept her Epipens at school, but this story reminds us all of how quickly a reaction can grow out of control. As they say, seconds count. (People TOTALLY forget that and look at you like you are crazy when you act annoyed about your daughter going to gym class in a separate building where her Epipen will be a block and a half away. No, they don't eat in gym. But do you want to be the one sprinting on a mad dash looking for an Epipen in case of some freak emergency? I don't think so.) I wonder if Georgia's teachers would've remembered where the Epi was in a time of crisis? I wonder if they'd have remembered how to use it? For my own sanity, I generally like to assume the answer is yes and put these terrible thoughts out of my head, but stories like this one are a painful reminder that things can go horribly wrong.

--it's not clear to me what all the facts were here. It appears there was no Epipen in the classroom or at the school to give the girl. But we have no idea how long it took the EMTs to arrive. Presumably they had epinepherine on board the ambulance, but I don't know. Also, as much as Epipens are thought of as a life-saving device (which they can be), I think people need to realize that sometimes they are not enough.

I don't mean to make this all about ME, and Georgia, and our family. My heart goes out to this family. I can't even imagine the pain and grief they are dealing with.

Now go hug your little ones, be they babies or all grown up. Squeeze them tight.

I just visited Kourtney Kardashian's blog. Really???

2010-11-23T08:33:00.000-08:00

I'm not a follower of the Kardashians or their reality TV show, but I heard via FAAN's Facebook feed that Kourtney Kardashian recently had to rush her 11 month old son to the hospital after he had an allergic reaction (vomiting and hives) to eating his first taste of peanut butter.

Here's a link to the People.com blurb about it:
http://www.people.com/people/article/0,,20444171,00.html

Oh! I feel for her! I have never had to rush Georgia to the hospital and can only imagine how scary this must have been.

The reason I was compelled to visit her blog and comment was to leave an encouraging word. Apparently a lot of people have been criticizing Kourtney and calling her a bad mom for giving her son peanut butter in the first place, and then also for taking him to the hospital, saying things like, "I can't believe you'd go to the hospital for an allergic reaction."

Others in the food allergy community seem instantly ready for her to become a spokesperson, never mind that she's probably still adjusting to the news herself and isn't up to speed on all the facts about food allergies.

It is hard enough to deal with the overwhelming feelings that come with discovering your child has a food allergy. I can't imagine adding to that the stress of being in the public eye and having your every move judged. She may have chosen a life of celebrity and everything that comes with that, but she sure didn't choose for her son to have a food allergy. Good luck to you, Kourtney. I'm glad your son is okay.

RAST results

2010-11-09T12:24:00.000-08:00

The results of Georgia's blood work came in and are as follows: (I'll explain the "Class" numbers to the best of my ability at the bottom of this post.)

Peanut went up but remains at a Class III.
Sesame went up and rose from a Class II to a Class III.

For some of the fish, we were able to get more specific results than in the past. They were able to separately test for cod fish, tuna, salmon, halibut and tilapia, and I'm not sure they did that before because I don't have 2008 and 2009 numbers for all those fish. She's testing positive for all of those. Her cod fish and tilapia scores went down, although they both remain in the Class III range.

Similarly, we got a more specific breakdown of the tree nut scores this year. The good news is that for some of the nuts (i.e., almonds, pine nuts and hazel nuts) her scores are so low that they are considered a Class 0 (i.e., negative test result) or Class I. Our allergist explained this to mean that if Georgia's scores remain low, then when Georgia gets a little bigger the allergist will recommend that she do a food challenge for those nuts. Now, even if she were to pass such a food challenge, she might have to continue avoiding those nuts for fear of cross contamination. However, manufacturing practices are improving, as is allergy awareness, so I know there are already certain products out there (e.g., particular brands of almond butter) that you can safely consume even if you're allergic to other nuts. So, no change on our nut avoidance practices for now, but maybe in a year or two? Fingers crossed.

Her highest tree nut scores were for pecans and walnuts.

Now the grand finale: Georgia's not allergic to shellfish! (Or "sellfish" as she likes to pronounce it.) Woo hoo! As the results have been explained to me, Georgia may never have been allergic to shellfish, but we were previously told to avoid all shellfish due to (1) her allergic history/profile; (2) the fact that testing is not 100% reliable; and (3) the fact that she has a fish allergy, thus making the risk of cross contamination high (due to the handling/processing of seafood). Anyway, we are thrilled. I don't know any 3 year olds who eat tons of shrimp and crab, but I don't care - this still opens up a whole new category of protein for us and moves a few foods back out of the "threat" column for our family. Even if Georgia hates the taste of shellfish, or refuses to eat it, at least Joe and I can now eat crab and shrimp at home without worrying - yea!

Practically speaking, we will be reading labels carefully, and probably buying exclusively frozen shellfish to eat at home. The risk of cross contamination from other fish in restaurants or from the fresh seafood counter at the grocery store is too high to risk eating that stuff.

While I had the allergist on the phone I also picked her brain about DHA fortified foods. You may have noticed your milk or other foods being marketed as, "Now with DHA!" They want you to believe it will make you smarter or make you live longer - I don't know. Hey, I'm not knocking it - I take a fish oil pill everyday hoping there's at least some value to it. What I was worried about was that these DHA fortified products may contain a fish oil that Georgia's allergic to. The allergist's answer was that many DHA products are actually made from seaweed and should be okay, but that we should always read labels. If something's made with fish, it is required by law to state that it includes fish. So, I'll be doing some label perusing at the grocery store soon. Last thing I need is for Georgia to be served supposedly safe milk and cookies, only to find out that the food scientists of the world have figured out a way to get fish into them.

Oh - so a word about the "Class" levels referred to above. In my own words: the Class just corresponds to the level of probability that a positive result is in fact accurate. It is not a measure of the "severity" of one's allergy, though you will see many confused parents discussing these things online as if that is the case. (In looking into the meaning of the Classes, I was amazed at the misinformation swirling around on online message boards. People saying things like, "My son scored a 6 on a scale from 1 to 4." What? That doesn't even make sense. Made me think of Spinal Tap, though - turn it to ELEVEN.) : )

Here's a slightly more scientific explanation from a website called Food Allergy Support, though I have to add that I'm not really familiar with the site or that organization and therefore can't vouch for the veracity of the following:

"The severity of a person's allergic response is not related to RAST level. Class 3 individuals can have severe responses and Class 6 can have mild. RAST tests are only useful to determine whether an individual is allergy, not how allergic they are. However, different antigens have different threshold levels above which an allergic response is likely. For example, people with a peanut RAST result of >14kU/l are likely to have an allergic response to peanut. Soybean typically required >30kU/l; egg as little as 7kU/l. Class 1 and Class 2 often fall below the threshold where most individuals would experience a food reaction, so doctors often consider results in this range equivocal. If results fall in this range and the patient has not experienced an actual reaction to a food, the allergy may be confirmed via a food challenge."

So, there you have it! This was supposed to be a quickie post. Oops.

Allergist Visit (and answers to some questions)

2010-10-26T22:19:00.000-07:00

Our first visit to Georgia's new allergist was great! We all really liked her, including Georgia.

I can't believe how positive I felt after this appointment, considering that at the end of the day, nothing has really changed for us so far. We'll have to wait 7-10 days to get the RAST score results from Georgia's blood work, and even then I'll be surprised if she's eligible for any food challenges. Still, though, this doctor just spoke so positively about all of the research that's being done in the field of food allergies that it was the first time I've felt like there's real hope for a cure, not in the esoteric "someday" sense, but truly in the "Georgia won't always have to deal with this" sense. (Maybe even by high school!) For any food allergy sufferer, I'm sure that would be happy news. For a mother, the thought is enough to make one burst into tears of joy. (I didn't. I'm just sayin.)

Anyway, we asked some questions (some of which are frequently posed to me by friends or family), so I thought I'd share the answers. (The nerdy lawyer in me is now compelled to remind you that I'm just relaying what I heard, and that no one should follow this advice but should instead talk to a doctor about your individual circumstances.) Also, all of the answers below have been paraphrased and elaborated on to my heart's content.

1) The EpiPen temperature and light control issue. Official guidelines recommend keeping the EpiPen between 76-78 degrees and out of direct sunlight. This is tricky when you live in a place with temps ranging from -10 to 110. I know some people who keep their Epi in a cooler all summer when they go out. Others have been told to keep the Epi in its original cardboard box so as not to expose it to too much light. What are we supposed to do?

Our allergist's answers:
Temperature: She tells people to take it with them, and that if they're comfortable, the Epi is comfortable, and not to worry about it too much. So basically, I took this to mean don't leave it in your car's glove box (duh), but you don't need to stress if it's 90 degrees out and you're heading to lunch. Based on her answer, I won't be worrying with a special case for the Epi unless we'll be somewhere very hot or very cold for an extended period of time. Beach day? Yes. Quick trip to the park on a hot day? No.

Light: No, you do not need to keep it in a cardboard box, or a bag, or otherwise strive for darkness. The idea is to not leave it lying in direct sunlight, but carrying it around in the plastic green carrier it comes with should be fine. In other words, it's not going to go bad in light the way that exposed film would.

2) Labeling. We were looking for greater clarity about whether to avoid all foods made on shared equipment, or "made in the same facility as," and that kind of thing. We asked this question knowing that there's no "right" answer, but I just wanted someone to tell me what to do! Plus I wanted to know that the answer is based on facts and reasoning. (To elaborate: I feel like we have been living a double standard, because we never bring foods labeled this way into our home from the grocery store, and yet when we do occasionally eat out it's not like I'm asking to see the packaging of the bread that Georgia's sandwich is made on. So while I know, for example, that that bread doesn't contain nuts or sesame (because I asked the wait staff), I can't tell you that it wasn't "produced in the same facility" as another food containing her allergens.)

Allergist's answer: We can serve products that do not contain Georgia's allergens (peanuts, tree nuts, sesame, fish and shellfish) in the ingredients list but are labeled as having been produced in the same facility as those allergens. We should not serve products that are labeled as having been produced on the same equipment as those allergens. (Also, we should not serve products labeled as "may contain" or "may contain traces of" with respect to Georgia's allergens, but we were already clear on that.) The doctor did not know of any good statistical studies about the number of allergic reactions stemming from foods that supposedly did not contain the offending ingredient but were labeled this way (as "same facility" or "same equipment"). However, she did say that she has had patients who have had serious reactions to "shared equipment" foods.

3) What about June? June has eaten eggs, but she has not had any nuts, sesame, fish or shellfish, simply because we don't typically have those foods in our home. So far she has displayed no signs of food allergies. We were wondering whether she is supposed to continue avoiding those foods because we now have a family history of allergies? Or when are we supposed to introduce them?

Allergist's answer: The long and short of it is that before sending June to an environment like preschool (2 years from now), we'll need to know for sure if she has any food allergies. However, we shouldn't really introduce June to Georgia's allergens until we're prepared to make those foods a regular part of her diet, because there have been cases of people eating a food so infrequently that they essentially develop an allergy to it. (I don't think researchers are 100% clear on the science behind this causation concept, or where allergies come from generally, so don't ask me to explain it, but apparently insofar as it relates to how we are to treat June, this is the prevailing wisdom for the time being.) The allergist told us about families where 1 parent has to go on a weekly peanut butter date with the non-allergic sibling just to make sure that the non-allergic sibling continues to be able to eat peanuts.

It's a big sacrifice, I know, but I will go out on a limb now and say that when the time comes, I'll go on a weekly date to eat Reese's cups with June. : ) It would be a needless hassle in our daily lives right now to incorporate nuts, fish, shellfish and sesame into June's diet when the rest of us aren't eating those things at home, so we'll be tabling the introduction of those foods for at least another year or so.

4) EpiPen Use. Should we have injected Georgia with the EpiPen during reactions that were (a) handled adequately by Benadryl, but (b) caused her to cough? (We asked this question because of stuff I have been reading on the topic. My confusion was, if it's a seemingly "mild" reaction that appears to be adequately handled by Benadryl, is it really necessary to inject the EpiPen just because there's a little coughing involved?)

Allergist's answer: Yes. If the reaction is affecting skin only (hives, some facial swelling), then Benadryl is okay. If it is affecting breathing in any way or involves the swelling of the tongue, then inject Georgia's thigh with the EpiPen and call 911. Ugh. I could write a whole post about this topic. It's a bit frustrating and disheartening.

5) Peanut oil. Must we avoid it? Prior to this appointment, we hadn't been worrying about avoiding peanut oil in most settings, because studies show that most allergic individuals can safely consume peanut oil if it's not cold pressed, expelled or extruded -- types of peanut oil that are all associated with "gourmet" oils, not the stuff they dump in the fryer at your average restaurant.

Allergist's answer: Yes, you should avoid peanut oil. It may be true that most types are okay, but you'll never know for sure what you're getting, and it's too risky. Again, to this I say: ugh. It's not like avoiding peanut oil is hard when you're buying things at the store - you just read the label. The problem is in settings where things like fries or chips are served, and now we can no longer assume that they're fine. As an aside, I would say to anyone reading this who is uninitiated into the world of food allergies, this is part of the problem: you end up having to avoid a lot of foods that in actuality are probably fine for you to eat, not just the ones that you know are dangerous. It's more limiting, and it also causes people to look at you like you are crazy overprotective when you tell them your daughter can't eat the french fries because she's allergic to peanuts.

So, that was it! All in all, a great appointment and wonderful chance to get some questions answered. Our allergist thinks that immunotherapy treatments now being conducted in clinical trials may be available to the public in 2 to 3 years. Wouldn't that be fantastic?

Allergy Mom Confessions: Pad Thai

2010-10-08T12:44:00.000-07:00

Last night after the girls went to bed, Joe and I ordered pad thai take-out. You know, the kind with the little mound of tiny bits of chopped up peanuts on top?

We took it outside and ate it on the back porch just to be safe. And it was delicious.

I felt like I should destroy the evidence and take a shower afterwards. Never in a million years did I think I'd be snarfing down pad thai on my porch like it was contraband. The things we do now... Too funny.

New Allergist

2010-10-06T06:00:00.000-07:00

First let me say: if you are in med school, or thinking about enrolling, I highly recommend you pursue the field of allergy and immunology. Granted, I am not a doctor and know nothing about the training involved or what the job pays relative to other specialties, but I can tell you there must be a shortage of pediatric allergists based on how long it takes to get an appointment.

Georgia's allergist, who we liked very much, moved out of state, thus forcing us to figure out an alternative. Switch to a different doctor within the same practice? Or switch to a new doctor in an entirely different practice? Pros and cons were weighed. Complicating the decision-making process was my firmly held opinion (based entirely on anecdotal evidence) that there's a wide range in the quality of available allergists. Some allergists take the time to educate the patient (or the patient's parents, as the case may be), and others only run a simple blood or skin test and send you on your merry way into a total morass of misinformation, which is scary when you consider that confusion about allergies can lead to life threatening situations.

We ended up deciding to stay with the same practice since they know Georgia's history, and we have come to expect a certain level of quality service from them. Well, we decided to stay, that is, until I called looking for an appointment 8 weeks out and was told that NONE of the physicians in the group had a single available appointment for the remainder of the YEAR! Our name was added to a several-months-long waiting list, even though Georgia is considered an existing patient of this practice.

So, that pretty much ended it for me. We'll be trying out a new allergist, at a new practice, where we were able to get in with about one month's notice. We got a recommendation for this allergist from a doctor friend of ours, and I've now begun the process of building this new allergist's abilities up in my head to the level of "magical wizard who will solve all of our problems". That's realistic, right?

Seriously, though, I get kind of keyed up for these appointments. They only happen once a year. On the plus side, the limited frequency of visits is a nice reminder that Georgia's condition is a very livable one. Think of all the children with diseases that require them to be in and out of doctor's offices and hospitals all year, constantly being tested, poked and prodded. I am so grateful for our health and the fact that no one in our family is facing that situation at the moment. On the down side, the once a year nature of these allergist appointments makes it feel like you've only got one shot to get more information and ask questions in person. One opportunity to change the course of how you live your daily life for the next year.

I guess I'm exaggerating a bit; it's not like you can't contact them at other times of year, but the annual appointment is the big show in my book. So tell me now - are there questions you have thought of that I should be asking? I don't want to forget to ask anything while I've got the allergist's ear!

Dude, you need to relax.

2010-09-29T08:32:00.000-07:00

So you think you're all cool and not at all worried about allergies. You're sure you're not harboring low-level anxiety at all times.

And then your cell phone rings in your office while you're at work, and it's someone calling from the preschool, and your heart is racing as they're saying, "This is so and so from such and such school, and I'm just calling because..." And you're thinking to yourself, "How fast can I get there?"

Except that all they are calling about is the fact that school pictures are happening on a Monday, but your daughter doesn't attend on Mondays, so you'll need to make a special trip to drop by if you want to have her included in the class photo.

Oh.

Okay.

So, um? No one's dying?

Fantastic.

We'll be there at 8:00.

Oh, and p.s. did you know that you just gave me a heart attack?

(No, I did not say any of that. Was just thinking it.)

Anyway, apparently I need to take a chill pill.

Chef's Card: Before and After

2010-09-27T18:51:00.001-07:00

I had been meaning to create a decent chef's card for a long time but had never gotten around to it. Part of the delay was admittedly due to the fact that we just don't take Georgia out to eat much, but I know that's no excuse - I mean, it's not like we never go out to eat. And then every time we'd get ready to leave for a vacation, where we'd obviously be eating out several times in a week, the idea of a chef's card would come to mind again. I guess that in the hustle of wrapping up work, getting ready to leave town, buying necessities (and usually packing for 3 of the 4 of us), the chef's card always fell by the wayside.

Well, after this little incident, I finally got off of my duff and created a better one. If you aren't familiar with chef's cards, I think the pictures will explain it.

Before:

{Yes, that's a scrap of pink construction paper. Nuts/Fish/Sesame is my way of shortening peanuts, tree nuts, fish, shellfish and sesame. I know it's important to convey ALL of Georgia's allergies, but I'm also of the mind that too many words can lead to people tuning out the whole thing. Maybe others disagree?}

After:

{Free template available on FAAN's website. I highlighted the words at the top to draw attention to them. This one is printed on bright paper so that it's less likely to get overlooked by a waiter or cook, and it's laminated. I only have the one but figure I should print some more since they're likely to not return from the kitchen.}

What do you think? Looking at it now, I'm wishing I had specified pine nuts, but at least I remembered to put pesto, which is the usual sneaky pine nut culprit.

Georgia and June's Crayon Party

2010-09-03T20:10:00.000-07:00

We celebrated Georgia's 3rd birthday and June's 1st with a crayon themed party. (Allergy-friendly, of course, which I feel compelled to mention since I've parked this post here on Dining With Goldilocks.)

This first picture is just for fun, lest you get the idea from the rest of these pics that everything always looks so put together in our house.

{Here's Georgia "helping" me with the decorations the day before. She's in pajamas, eating dry Cheerios, it's about 5:00 p.m., and she has strewn cupcake wrappers everywhere, amidst a pillow that she dragged into the kitchen and a toy stroller she knocked over.}

We covered all tables and parts of the wall in butcher paper for drawing. Crayons were on sale for back to school at Target, so I was able to get several hundred for just $4.00.

The cupcakes were maybe my favorite use of the theme. I bought a nice set of food coloring (which I'll be able to continue using for a long time), and made a veritable rainbow of frosting colors, in various shades of each hue. I purchased the edible crayon cupcake toppers.

Originally I thought I would go on Flickr to find cool pictures of crayons to use in our decorations, but I couldn't figure out how to print them. Then I thought, why don't I just photograph some crayons myself? Here is a no-sew Happy Birthday banner that I made out of 4x6 prints of my crayon snapshots.

Here's a better look at one of my crayon shots. They're all available under my Flickr handle (baumgak) if anyone wants to use them.

My niece, Alice, drawing on our walls. I figured drawing on the walls would be a treat seeing as how it's usually a big no-no.

I discovered this after the party. I believe it's supposed to say "Juney and Georgia".

We had a ton of fun making the favors, and they were a great tie-in to the theme. Here's a picture of the favors before they were bagged. Georgia helped me to upcycle crayon bits from the bottom of her box into star and circle shapes by melting them in the oven. Instructions found here. (Tips: Do not use washable crayons. If using silicone pans, put oven at 200.) Also, I adapted an idea I think I originally saw on Design Mom of taking a photo of an outstretched fist and inserting a lollipop stick, but instead we did it with crayons. Such a cool effect! I must say I'm impressed with us that we were able to get a usable shot of June for this purpose, since she can't make a fist on demand. She is pictured handing someone a tiny leaf that she found on the ground. Hey, whatever works!

We played "Drop the Crayon", a variation on the more familiar "Drop the Clothespin", wherein the goal is to drop a small object into vessels decreasing in size with each round. We started with a large metal mixing bowl and worked down to a drinking glass.

Sam checking out whether Harry made it.

He did!

Here I am casting a spell on the presents. Just kidding. Actually, in lieu of other gifts, we did a book exchange. Every child came with a wrapped book, and every child got to go home with a book new to him or her. I think it worked great for a very small group of young children close in age like we had.

This doesn't have much to do with the crayon theme, other than the fact that it's colorful, but I got the idea for using a Pack n Play to make a ball pit from Rookie Moms. I thought it was hysterical and the kids got a real kick out of it, too.

See, Sam is why we need a sign like this. : )

Sam and Harry having a chat in the ball pit.

Well, that about does it for showing off our decorations. On to the party pics and gratuitous face-full-of-cake shots!

"We are making these nice fake smiles for your photograph. May we eat our cupcakes now, please?"

Max re-purposing a "Drop the Crayon" bowl.

Happy Birthday!

How many people does it take to blow out 1 candle?

My sister commented that June appeared to be approaching the cupcake like a blind person at first. You can see what she meant from this picture.

Ahhh, there we go!

Just wanted to show off their "1" and "3" t-shirts. Georgia wore the "1" on her first birthday, too. I've decided to make number shirts a birthday tradition in our house. (Well, for the kids anyway!)

Synchronized cupcake eating!

I think Georgia's face is saying, "Daddy, please shave." Joe's been keeping his vacation beard well past vacation just for fun. It's going away this weekend, but now it will be forever remembered in photographs thanks to the many momentous occasions we celebrated in August 2010.

My baby!

A genuine Juney smile.

Thanks for visiting!

Walnut pesto mayo. Are you kidding me?

2010-09-01T08:00:00.000-07:00

I feel like I'm beginning to bore myself with so much recent allergy talk, so I'm going to make a long story short:

Went out to lunch with the girls last Friday.
Looked at the menu online ahead of time for safe options.
Ordered her a ham and cheese sandwich.
Told the waiter about Georgia's allergies (nuts, fish, sesame). (Aka, peanuts, tree nuts, fish, shellfish, and sesame.)
Tried to hand the waiter a small piece of paper with Georgia's allergies written down clearly in all caps. (My shoddy version of a chef's card, I guess.)
Reminded the waiter to be careful not just of her food but of cross contamination from other food (e.g., the person who just prepared a PB&J shouldn't handle Georgia's sandwich).
Food arrives. Georgia eats one bite only. She's normally a big eater.
I notice one hive and ask my sister to wipe Georgia's cheek, thinking it might just be a contact reaction to something.
I notice the mayo on Georgia's sandwich looks a little funny and ask my sister to investigate.
Turns out, they put walnut pesto mayo on Georgia's sandwich! Are you kidding me?
Remain calm. Wait to see if medication is needed. Decide medication is needed, because Georgia is acting like a spaced out zombie.
Give Benadryl. She immediately perks up.
Total reaction amounted to about 2 hives, zombie-like state, loss of appetite, redness on her cheek, one or two coughs (which may or may not have been related to any of this), and whatever the hell else may have been going on inside of her that I will never know about. (See below for more on that.)

I was kind of mortified that this all happened in the company of my sister's friends and their children, because I felt like we were causing a bit of a scene, even though everyone couldn't have been nicer about it. Good news is that Georgia ended up fine. Bad news is that this was a very frustrating experience. I'm normally so embarrassed (I know I shouldn't be) to address Georgia's allergies head on in restaurants, but this time I think I really did everything I was supposed to do up front. There was just a breakdown in communication between the waiter and the kitchen, I guess. Because I am a huge nerd, I have since written the restaurant manager a letter to tell them what occurred and that I think they may need better allergy policies or staff education in place. Basically, I just want to keep this from happening to someone else.

Silver lining here is that Georgia and I had a nice chat about her reaction on the way home. Any reaction, though unfortunate, is a data point that we can learn from, an experience that will help Georgia to better identify and articulate in the future when she thinks she may be having a reaction.

I feel like an idiot, because during our chat, I asked her if it felt funny when she ate the bite of sandwich, and I totally misundertsood her anwer. She responded by saying that it felt like she had a pipe in her mouth. A pipe? I was picturing the type of pipe a person would smoke tobacco from, and I couldn't even think of where she had seen a pipe, other than Curious George books, or maybe pictures of Santa. So I figured there was no way she'd really know what having a pipe in your mouth would feel like and basically chalked her response up to toddler nonsense. But later that day, when Joe got home from work he asked her about what had happened at the restaurant, and Georgia again told him that her mouth had felt like it had a pipe in it. "A pipe? What kind of pipe?" he asked. "You know, a pipe. Like how water goes through pipes," she said. Ohhhhhhhh. Duh. So, I gather that she was feeling some constriction of her throat or swelling in her mouth or something, based on this description. Which makes the whole experience just a little scarier in retrospect, but I am not going to dwell unnecessarily on that, because the point is that she recovered quickly and is fine.

(Wish I could have said the same about my mental state that day. I was still replaying everything in my head and worrying unnecessarily about hypothetical situations by the time I went to bed.)

Friendly Confines Indeed

2010-08-31T14:50:00.001-07:00

(Just wanted to follow up that last post with something a little more uplifting, and then I'll get off the topic of this baseball game...)

Everything I've seen online today indicates that the Cubs' first peanut-free section was a huge success. People on Facebook described the experience as great, unforgetable, special, and even surreal. I haven't heard a negative word about it. Sounds like the Cubs organization seriously went above and beyond, thinking of everything they could do to make the experience a wonderful one for everyone involved. (I'm not kidding - they even had a nurse from the allergy department of the local children's hospital on hand. They gave out favors to the kids that included a picture of the Wrigley marquee sign with their name in lights!) I read these people's stories and realized what a big deal this was for some of the kids involved. Truly heartwarming stuff, folks.

Note to Self: Do NOT read the comments

2010-08-30T07:00:00.000-07:00

When will I ever heed this advice? I'm not talking about comments on blogs like this one. (On that note, I would love more input from any readers of this blog, even when you disagree with me.) I'm talking about readers' comments to online versions of articles in popular media.

I keep making the same stupid mistake over and over again, scrolling down to the comments to see what the average Joe is thinking about food allergies, only to discover that the average Joe is apparently not so nice! (And it kind of crushes me. I wish I were better at not letting it get to me.)

I think what I have to keep in mind is that the average Joe really probably is pretty nice, (or at least has enough open-mindedness to learn more about something before vilifying someone over it), but the problem is that the subset of "people who bother leaving comments on these articles" includes more off-the-deep-end angry people than the general population does. Oh, and quite a few off-the-deep-end ignorant people, too.

I'm bringing this all up in response to what some people are saying about tonight's Peanut-Free game at Wrigley Field. You can get a flavor for the idiocy (without having to actually immerse yourself in it) by reading Kelly Rudnicki's smart responses here. (If you are not the parent of a food allergic child, I highly recommend following that link, if only to better comprehend the inane flack that the food allergy community has to deal with.)

I should not take this all personally, espcially because stupid comments are not unique to the topic of food allergies. I was utterly shocked last week after reading about the massacre of 72 immigrants at the hands of a Mexican drug cartel. The only thing more appalling than the fact that almost no Americans even heard about this event (despite it having involved the death of a Marine), was the comments to the article, which were along the lines of, "thank you Mexican drug lords, that's 72 less for us to deal with." I feel gross just having typed that.

But I digress. The point is that I really have not had unpleasant interactions or conversations relating to food allergies in real life, with real people I actually know. Real people are always curious, considerate, and sympathetic. It's only these online, practically imaginary (to me) people who are so rude. So I really should stop reading the comments.

Take Me Out to the Ballgame

2010-08-29T20:01:00.000-07:00

In case you haven't heard the news, peanut-free baseball is coming to Wrigley tomorrow night!
Here's a link to the Sun-Times article about it: http://www.suntimes.com/news/metro/2630402,CST-NWS-nopeanuts24.article

This is thanks in large part to some key organizers and a facebook fan page called "Chicago Cubs Fans for Peanut Free Baseball." (My only part in any of this was to become a "fan" of that Facebook page, which you can, too, with only one little mouse click.)

The Cubs organization listened and agreed to make one section peanut-free for one night game this year. I think people are hopeful that this event will be a success and will grow from there. Peanut free sections, or even peanut-free stadiums are things other major league baseball clubs have done, but this event is a first for the Cubs.

So, a few personal thoughts about all of this:
--I don't think Georgia's allergies are so bad that she would be sensitive to sitting in a regular section at the stadium (i.e., that she'd react to airborne peanut dust). That said, she's never been to a ballgame or any place with such an abundance of peanuts, so I don't really know.
--Even if she could handle a regular section, I'd love to take her to a peanut-free game/section like this someday. It's a great way to show support for families of children who definitely do have allergic reactions without peanut-free zones. Also, it would be a great way to meet other kids dealing with food allergies, which is such an important thing for children. Everyone just wants to feel normal, ya know?
--With a little more advance notice, and had this been a day game, I would've tried to get tickets. But being that Georgia just turned 3, this is a night game, and she's got preschool the next morning (which she just started), attending this game won't be possible for us. Hopefully there will be a "next time" so that we can try to go next year.
--On that note, I foolishly had this fear that many people would be in the same boat as us and that there wouldn't be a good enough turnout for the Cubs to want to do this again next year. Silly me. Turns out the 8/30 Peanut Free box is sold out, with over 75 families on a waiting list! The Facebook page says to email fanservicesassistant@cubs.com if you are interested in attending a future game.

I'll end this with a little anecdote. Somewhere along the way, singing "Take Me Out to the Ballgame" became part of Georgia's bedtime ritual. We've probably sung it every night for more than a year now. Of course there is the line, "buy me some peanuts and Cracker Jack." But in our house, this is always followed by a quickly interjected, "but don't eat 'em!" Georgia probably thinks that's part of the real song. Ha! (Sounds so dorky, I know, and if you are not accustomed to having to teach your child allergy awareness all the time, you're probably rolling your eyes. But when you're trying to teach a consistent message to a very young child just beginning to grasp her own allergies, this is the type of goofy thing you end up doing, I guess!)

Unbelievable Turn of Events

2010-08-26T20:25:00.000-07:00

In January 2009, Joel Stein wrote a piece in the L.A. Times which included such offensive, insulting gems as the following:

"Your kid doesn’t have an allergy to nuts. Your kid has a parent who needs to feel special.”

"And genes certainly don't cause 25% of parents to believe that their kids have food allergies, when 4% do. Yuppiedom does."

I'd rather not link to that article, but I suppose you can find it on Google.

In August 2010, Joel Stein wrote a piece for TIME magazine in which he revealed that his 15 month old son was.......wait for it........recently diagnosed with nut allergies. !!!! Here's a quote:

"The column was not the first thing that came to mind after my 1-year-old son Laszlo started sneezing, then breaking out in hives, then rubbing his eyes, then crying through welded-shut eyes, then screaming and, finally, vomiting copiously at the entrance of the Childrens Hospital emergency room."

I really wish Joel Stein hadn't written that first article.
But I also really wish his son didn't have a food allergy. I wouldn't wish it on anyone. Georgia has thankfully never had a reaction landing us in the ER, and I can't imagine how terrifying that would be for any parent.

Why must hurtful words, misinformation, and food allergies go hand in hand?
I'm sure only a small fraction of the people who read the first article will pick up the second. Even the second is a bit too cheeky and not enough mea culpa for my taste.

For more on this topic, go here: The Food Allergy Mama
or here: The Nut-Free Mom Blog
or here: Allergy Moms (newsletter) [scroll down to "Peanut-Free Tables are Turned!"]

That Went Well!

2010-08-26T19:41:00.000-07:00

Things have been busy around here, but I guess I should follow up on how the allergy summit (as we affectionately refer to it) went. In short, it went great!

We met with Georgia's two teachers, the head of the school, and the head of the early-childhood portion of the school on the day before preschool started. We all gathered around a preschooler height table, sitting in tiny preschooler sized chairs. Ha!

I don't want to bore anyone with all of the details, but we discussed such things as:
-The basics: We went over Georgia's allergens (tree nuts, peanuts, sesame, fish and shellfish).
-Snack time: We'll send Georgia with her own safe snack everyday. Plus, the teachers agreed to send a note home to all of the other parents asking them not to send in snacks with Georgia's allergens. Essentially, a belt and suspenders approach. Hopefully the other parents will cooperate, but Georgia will be eating our food anyway. Georgia is a half-day student, so we don't have to worry about lunchroom issues this year.
-Substitute teachers: they'll need to know this stuff, too, so we discussed communication. I'm actually not horribly worried about this since Georgia's pre-K class has two teachers. It's unlikely they'll both be out on the same day.
-Treats: We'll bring in a stash of safe treats to be stored at school for Georgia to consume on days when special occasions like birthdays or holidays are celebrated with food in the classroom.
-Medication: One of Georgia's EpiPens will be in the office across the hall from her classroom, the other will be in the school's main office. We also supplied Benadryl. We used the trainer EpiPen to teach everyone at this meeting how to use one in case of emergency. We handed out an Emergency Medical Plan to be stored with the medications. It describes different levels of possible reactions and that kind of thing.
-I feel like there was more to it, but that's all I'm remembering right now.

The Cons:
-One of the women present twice accidentally referred to Georgia as a boy. I hate to say it, but this woman is a bit older, and I think the slip ups might be related to that - like a little short term memory issue. Which is totally no big deal, except that in the context of conveying information that is critically important to our daughter's health and safety, it didn't make me feel great that everything would be remembered and carried out according to the discussed plan.
-I made reference to storing the Epi's in an unlocked place, but someone misunderstood and later in the conversation referred to locking up the Epi's. A simple miscommunication that we cleared up, but I just hope that everyone got the gist that these things need to be very accessible. Fortunately, we have never even had to use them. But should the need arise, from what I've been told, seconds really count. If I had my druthers, the medication would be stored in the classroom, but apparently it's against school policy.

The Pros:
-This was not all new to them. The school has had allergic children before. They do not have formal policies or procedures in place, but at least we weren't having to fully educate them from square one, which was fantastic.
-Both of Georgia's teachers have some experience dealing with children with food allergies.
-One of Georgia's teachers was taking notes, which made me feel wonderful. She is also the one who suggested (before I even could) that she write a note to all of the other parents letting them know that there is a student in the class with allergies.

I will admit - I was totally nervous about this meeting. But I survived. It was fine. It was quite pleasant, actually. Silver lining of having an allergy kid: we got a chance to meet the teachers a day early. And though we may now squarely be labeled as the High Maintenance Parents, at least they know who we are. (I hope they like us!! What? I can't help it.)

Georgia's made it through one week of preschool, and already I feel so much more relaxed. She's doing a great job eating only our snacks and wearing her bracelet. As for my mental health, I'm not worrying about allergies on a daily basis. So all is well.

Maybe the fact that she has cried about going to preschool every single day and has been suffering from some serious separation anxiety has a silver lining to it, too: all of this allergy business has been put on the back burner. This week I've had bigger fish to fry in the motherhood department, if you know what I mean.

Not that we can fry fish in our house. (Hardy har har.)

To School!

2010-08-17T14:41:00.000-07:00

This is a week of many firsts for us.
June's 1st birthday.
Georgia's heading to school (not "back to school" since she's never been before).
And the big kicker....
We're meeting with the head of the school and Georgia's teacher tomorrow morning to discuss allergies. Our first ever allergy advocacy meeting, if you will.

I am really not looking forward to it. I'm sure these women will be quite nice, and I know I have nothing to fear. It's just that this "allergy-parent" role is one of those things that I feel like I have to grin and bear even though I'd gladly have avoided the role. Oh well, such is parenting, right? I'm sure this will be the first of many such meetings with schools, camps, etc., so I had better get used to it.

At first I was feeling rather delinquent, because our meeting is happening, oh, the day before school starts. I would like to have scheduled this sooner and have this behind us already, but at least this way the information will be fresh in their minds at the beginning of the school year and not forgotten from an earlier meeting, right? Also, I'm feeling more prepared now. I used this food allergy checklist for back to school from The Nut-Free Mom blog. It's quite handy if you find yourself in this situation.

I'll report back on how the meeting goes!

Allerbling!

2010-08-16T13:26:00.000-07:00

Georgia has Allerbling now. Sweet!

No, I'm not joking. Could I make up a product name like that?

Allerbling is a type of medical alert bracelet made specifically for kids, both in size and appearance. My hope is that its bright color will mean that people actually see it and pay attention (as opposed to a regular, metal bracelt, which would be easier to miss). I also hope that its kid-friendly design will mean that Georgia will keep it on at preschool. We'll see about that.

Here's a picture. Sure beats pinning a big "DO NOT FEED ME" sign to her shirt everyday. (I have actually heard of allergy moms of yesteryear doing that, when food allergies in schools were not so commonplace. Sounds ridiculous, and yet highly effective at the same time...hmmm....something to consider if this Allerbling thing doesn't work out!)

I'm anxiously awaiting Allerbling's addition of a sesame charm to the mix. Too bad Georgia will then have too many allergy charms for them all to fit on 1 bracelet. *sigh*

See, I'm here to make all of you peanuts-only mamas feel lucky!

Glad to be home

2010-08-09T15:13:00.000-07:00

Just got back from a wonderful week's vacation! But...

Vacation brings food allergies to the forefront of our minds in a way that they normally aren't present in our day to day lives. More restaurants, takeout, desserts, and caretakers are involved.

All went really well. I have no complaints about vacation. I'm just saying that there is a sense of relief to coming home to your own pantry and fridge after a week on the go.

While traveling with a child with food allergies, vacation for me now has this "character building" aspect to it that I'd rather it didn't. As in, it forces me to practice being brave enough to ask questions of servers, restaurants, and hotels that (for God knows what reason) I often feel embarrassed to ask. (Confession: I like to make my husband do it instead whenever possible.)

Anyway...vacation was great. But it's also really nice to be home and to not be thinking about food allergies so often! Maybe you can relate?

EDITED TO ADD: Okay, so I was going to be nice and wasn't going to mention it to protect the innocent, but since my sister brought it up in the comments... There was that 1 incident where a pizza slice with pesto (i.e., tree nuts) was offered to Georgia, and she was moments away from eating it. Thankfully, that was avoided, though we'll never know how she would've reacted if at all. While this incident highlights how easy it is to have a slip up even when everyone is trying their best to protect an allergic child, and how hard it is for those not in the everyday practice of thinking about allergies to pay attention to every single ingredient, it's also a good opportunity for me to thank my family for trying so hard. Learning about allergies has been an evolving process for all of us, myself included, and I really appreciate my family's efforts to go along with all of our requests. I am thankful that vacation gave everyone in my family a glimpse into what it's like to think about allergies at every meal.

And you wonder why we allergy moms get a little nervous about preschool...

2010-07-01T10:02:00.000-07:00

A recent conversation with Georgia (age 2, almost 3), which was brought on by the topic of eating at preschool, and her new allergy alert bracelet:

Me: "So you can wear this bracelet to remind people of your allergies."

Georgia: "Yeah! It will be so great! And then the food will be safe."

Me: "Well....no, not necessarily. The food might still not be safe. You can just eat our food. We'll give you safe food. Because, well, you know...some other grown ups are not quite as good as mommy and daddy at reading the ingredients. So let's just eat our food, okay?"

Georgia: "Right."

Me (seeing a chance to practice): "Does Georgia eat peanuts?"
Georgia: "Nooooooo."

Me: "Or tree nuts?"
Georgia: "Noooooooo."

Me: "Or cucumbers?" (Just checking here, to see if she has any clue what she's saying.)
Georgia: "Nooooooo."

Me: "Actually, cucumbers are safe, sweetie. You can eat cucumbers."

Georgia: "Some people can't eat cucumbers. But we can eat them."
Me: "Um. Yeah. I guess so. But you can definitely eat cucumbers."
Me again: "So, anyway....no peanuts."
Georgia: "Right."

Me: "And no tree nuts."
Georgia: "Right."

Me: "And no fish."
Georgia: "Right. I can't eat fish. Well, I can't eat orange fish. I mean gold fish. I can't eat gold fish."

(Oh crap...this is really devolving. Is she talking about goldfish crackers now?)

Me: "Well, you can eat goldfish crackers, right? Yes. You can eat goldfish crackers, honey. But you just can't eat real fish."
Georgia: "Right."

I think what we can conclude here is that my oh-so-smart two year old may tell you at any given moment that she is allergic to cucumbers and goldfish.

Raising Your Child's Awareness vs. Freaking Them Out

2010-06-30T19:22:00.000-07:00

I recently read an interview of a psychologist studying the social and emotional toll of coping with food allergies. Specifically, the "shocking" levels of stress in mothers of children with food allergies.

I guess there was nothing shocking to me in the interview, but I took note of the following quote from Dr. Rebecca Knibb:

If the parents cope well, this behavior is learned by the child. Children are very perceptive and learn vicariously, i.e. they learn by watching how parents react to situations. If a parent is very anxious, the child tends to be anxious also.

That sounds about right to me. So, how do you teach your child to better understand his or her food allergy in order to keep them safe, without scaring them in the process? How do you go about hiding your "shocking" levels of anxiety from your sponge-like children? : )

My daughter is not yet 3 years old, and we are trying to gradually increase her awareness of her own food allergies and what that means as far as what she can and can't eat. This is especially important since she'll be starting preschool in the fall, surrounded by well-meaning adults and children who may occasionally offer her food that she should not eat.

However, we have never once told her something like, "You could die." I don't think she even gets it that plants die, or that bugs die when you squish them, so the last thing we need is for her to live in fear for her own life. I don't think any toddler should be burdened with such a heavy thought, but dare I say, our Georgia is an especially sensitive one. (Understatement of the century.) We have an age appropriate allergy book that mentions hives, coughing, itching, and that sort of thing, but if you asked Georgia, I think she'd tell you that her allergies might give her hives. If you asked her the follow up question of, "What is a hive?" I think that she might or might not be able to answer that. But again, please keep in mind that she's only 2.

So, it's all very weird. Some days she'll say things that make me feel proud of our efforts, like maybe she's really "getting" it. She's pretty good at asking us, "Do you have the EpiPens?" when we leave the house. (Not because we normally need a reminder, but more so that if she is ever with a new babysitter or relative that she will hopefully ask them the same thing.) And then on other days, someone will ask her if she wants a peanut butter sandwich, and she'll answer yes without hesitation, which is disappointing. But it's not surprising that when you're two, and have relied on trusted adults to meet your every need, that you don't exactly stop to question, "Wait - is this safe for me?" at every turn. It takes practice to instill this behavior.

Once again, there is no particular conclusion to this post. Obviously, I do have a certain level of anxiety related to Georgia's food allergies, though I try to keep it in check. Maybe this blog is a good outlet for me to write things down and get them off my chest, rather than passing my worries on to my daughter? It all goes back to that whole Goldilocks Principle thing -- I hope we are teaching her enough to be careful, but not so much as to be scared.

Up in the Air

2010-06-15T19:52:00.000-07:00

Remember how I was talking about flying with Georgia on a recent post about our trip to Florida? Well, as of then I was feeling pretty chill about the whole thing.

Now, the Department of Transportation is soliciting comments about what, if anything, to do about peanuts on commercial airlines. You can go here to read more or leave a comment if you have an opinion on the matter.

To put it bluntly, reading the comments of other people with opinions on this matter has left me feeling like I'm going to hyperventilate. Crap, can Georgia really DIE from airborne peanut dust in a plane? Should I not even be letting her fly? Someone please talk me down from the ledge now.

I didn't even leave a comment for the DOT yet because I don't know where I come out on the issue. Reading this formal response to the DOT from FAAN made me feel a lot better. I guess sometimes listening to experts and research results is better than letting yourself be inundated with personal anecdotes. I'd recommend reading FAAN's letter if you are looking for an educated, well written response from the "allergy community", especially if you would put yourself in the "I just don't get it" category or the "it should be your problem, not mine" category.

In other news, I had lunch with my friend Kim this Saturday and thoroughly enjoyed picking her brain about her practices living with a nut allergy for the past 30 years. Contrary to the whole DOT comments thing, talking with Kim had me feeling like if anything I could relax my standards a bit more. She always makes me feel better. I'll write more about all of that later.

As an aside...Kim flew into town for the weekend.
As a further aside...I'm guessing that Georgia is not so sensitive as to die from peanut dust on a plane, or she would've been screwed on our last flight. But with no tests for severity, and no real exposure history/ingestion reactions to rely on, I have no way of being 100% sure.

One more thing...I find it interesting that the DOT is soliciting comments on other issues like waiting on tarmacs and baggage policies, but this peanut issue is garnering about 6 times as many comments as any other issue. Obviously a hot button topic. You would think people would care more about waiting 8 hours on the tarmac than not being served their precious peanuts, but apparently not.

EDITED TO ADD: I think the DOT dropped the whole peanut ban proposal. Well, it wasn't even a proposal, really. They were just soliciting comments, and the peanut farmer lobbyists went nuts. (ha ha. pun intended.) It's a shame.

Rhubarb Crisp

2010-06-07T19:00:00.000-07:00

This isn't going to become a recipe blog. There are tons of existing resources for allergy friendly recipes out there already. However, as I was throwing together this rhubarb crisp tonight, it occurred to me that it's free of most allergens, and well, delicious, so I thought I'd share. It's very seasonal and easy to make.

1) Wash rhubarb and cut into small chunks -- about 4 cups worth, more or less.
2) Mix chopped rhubarb with 1 c sugar and 1/4 c flour and toss it all in a baking dish.
3) Combine the following in a bowl: 2/3 c brown sugar, 1/3 c butter (cold and cut into pats or smaller), 1/2 c flour, 1/2 c oats, and 1 tsp cinnamon. I mixed this all together using a pastry cutter cuz I own one and I'm cool like that. You could also use your fingers or two forks. Get it to a kinda crumbly consistency.
4) Shake crumbly topping on top of the rhubarb mixture in the baking dish.
5) Bake at 350 degrees for 30-40 minutes. It should be bubbly around the edges, with the topping having come to a brownish crisp. (Mine took the full 40. Damn!)

Yum.

Question is: will we share with our allergic daughter? Hmmm....

Florida Vacation Report

2010-05-10T14:54:00.000-07:00

I went into this vacation fully expecting that we'd have at least 1 allergy "incident", not because I was trying to be pessimistic, but because I was trying to be realistic and prepared. We were on a seafood-laden island with a child with a fish/shellfish allergy after all, plus Georgia did have a reaction while we were there last year. I figured the risk of cross-contamination in restaurants was pretty high.

Fortunately, we had no incidents! (Unless you count the mysterious hive that Georgia got on her wrist on the flight down, but more on that later.) Our lack of allergic reactions was admittedly due in large part to the fact that we only made it out to eat with the kids once the whole week. We were lucky to be staying in a condo with a full kitchen. Our reluctance to eat out was only partly driven by allergy concerns; it was much more related to juggling beach time with naps and bedtime, and the difficulty of getting everyone showered, dressed and out the door. At any rate, I'll take it!

As for the flights:

This is an area where I as a parent am probably more relaxed until I go about reading certain other allergy blogs and realize that other people are WAY more freaked out than I am about flying with a food allergic child. Who is to say whose approach is better? Some people won't fly with food allergic children because it plain scares them too much. Others bring wet wipes and make sure to wipe down all armrests, tray tables, etc. Then there's us. We're careful (as we always are) not to let Georgia eat anything containing her allergens, and we bring aboard plenty of Benadryl plus four Epipens just to be safe. But we don't otherwise take extra precautions when flying.

And now, a couple quick stories:

On the way down, Georgia got one tiny hive on her wrist. Didn't bother her. No idea what it was from. Could potentially have even been a bug bite. But it did make Joe and I exchange glances and think to ourselves, "What if?" I guess it made me wonder if I should actually be wiping things down more often? Seriously, though, you can't wipe down the whole world around you, right? So I am not sure that there's a rational point to doing so in limited instances. I would be happy to hear a counterargument from someone out there reading this.

On the flight back, we were cruising along and then heard the man in the row directly behind us say to his wife, "Honey, hand me my peanuts please." [CUE SOUND OF NEEDLE SCRATCHING ACROSS RECORD.] Okay, so this one resulted in even bigger exchanged glances and raised my anxiety level quite a bit. I can't fully explain why, I mean, it's not like he said, "Honey, hand me my peanuts please so that I can then touch the kid in front of me and make her eat them." Right? Besides, on our American Airlines flight they were selling mixed nuts for snacks, so it was just as likely that any other passenger could buy/eat/drop nuts, right? But still. There was just something unnerving about it, and it had me thinking that maybe those parents who board the plane and start wiping things down are not so crazy after all. I can almost guarantee you that had we been sitting in this man's seat after him (like on the next flight), Georgia would have gotten hives from contact with the nut residue. (Nut residue? Is that an actual thing? You know what I mean.)

Now, here's the part that I actually find hilarious. So amazing to me that you have no choice but to laugh. He was not just having a little snack pack of nuts, or a trail mix, or something like that. He was actually shelling his own peanuts on the plane. You know, like people normally do at a ballpark. In fact, ballparks are pretty much the only place that I have ever seen this (unless you count the reception desk at my father's office, but that's another story all together, and not a common business place snack offering, in my opinion).

I know he was just oblivious and not some kind of anti-allergy zealot, but I couldn't help thinking, are you kidding me? Have you been living under a rock to not know that some people are in favor of banning nuts all together on planes, and you think it's cool to SHELL whole peanuts about 12 inches away from my peanut-allergic child?

Now, don't misunderstand me. Although I found this all amazing, and it did cause me a certain degree of anxiety, I don't bear any ill will toward the man. In fact, later in the flight he entertained our 8 month-old by making funny faces, so I give him major nice guy points for that. I just kind of couldn't believe the nut thing.

So, there you have it. No real point or conclusion to all of this other than to say these things always get me thinking. Should I wipe surfaces more? Should I take more precautions when flying? Should I just try to relax?

And now, just for giggles (or shock value depending on how you view these things), here's a photo of me eating nuts on my very first flight with Georgia, when she was a baby and we did not yet know of her allergies.

{That's me with the fancy pinky, looking terrible but happy. Georgia would be the hidden baby under the blanket, just below the bowl of nuts.}

Help this study reach 1,000 participants!

2010-04-15T13:46:00.000-07:00

I've written on this blog before about our family's participation in the Children's Memorial Food Allergy Study. I also feel a sense of obligation to encourage others to sign up, too, because they need 1,000 participants to make the whole thing worthwhile. (Well, that's not how they put it - I'm sure there's a more technical statistical term for it.) Anyway, I had been meaning to do something but finally today just got around to sending an email to certain friends attempting to drum up support. So I figured while I was at it that I would post some of the same information on this blog. (The info below is from the AllergyMoms.com website.)

According to a recent survey, 86% of all U.S. clinical trials fail to recruit
the required number of participants on time. Never have there been so many
studies of promising therapies for food allergies-but without qualified
participants, this life-saving research cannot move forward. By participating in
a clinical trial, your family will contribute directly to the search for better
treatments and a cure.

Of course, participating in a research study is
an important commitment. You're sure to have questions about the therapy being
tested, the medical exams you'll need to take, the demands on your time, safety
issues, and more.

To learn more, check out the following resources,
which provide information on current food allergy clinical trials, how these
studies work, questions to ask if you're thinking of participating, and more.

FAI
www.faiusa.org/clinicaltrials
FAAN
www.foodallergy.org/page/research-activities

To learn more about the specific study our family participates in, go to: http://www.childrensmrc.org/allergy/study/

I Heart Faces: "I Heart Desserts"

2010-04-11T19:14:00.000-07:00

The theme this week at the i heart faces photography website is desserts.

No birthdays to speak of in our household, but these cupcakes do represent a special occasion: Georgia's first time ever helping to decorate (and eat!) homemade cupcakes since her egg challenge in January. (For those following along, her tolerance of baked eggs continues to go well, and today she even ate the first pancake of her life at the ripe old age of 2 years, 8 months, and 2 days. Well, she had a few bites, anyway. Despite her excitement about trying the pancake, she didn't really dig in.)

Anyway, the cupcakes above are what happens when you click on a parenting website searching for new ways to handle your two year old's behavior and instead come away with said website's "best of" cake and frosting recipes.

Recipes available here.

More dessert photos to be found here:

Eggs, and Preschools, and Birthday Parties, Oh My!

2010-03-08T09:49:00.000-08:00

There's quite possibly nothing more boring to read than blogging about blogging, but please bear with me for a moment. The problem with this blog is that I don't get around to posting my occasional post-worthy allergy thoughts, so they accumulate. After time passes, none seem important enough to post, or maybe they do, but then it's too daunting to write them all up, or I worry that it will all come across like I'm allergy obsessed because suddenly I have 6 allergy posts in 6 days? I don't know - clearly I'm over thinking all of this and just making excuses for what boils down to procrastination, so with no further ado, here is a dumping of some of these accumulated thoughts, boiled down as best as I can get them:

FAQ: How is the introduction of baked egg going?
Short answer is that it's going great - Georgia's been tolerating homemade baked goods without any reactions. Longer answer is that, as exciting as it was to be able to get started on introducing eggs to her diet, we've fallen off course in terms of following the doctor's protocol for introducing more and more egg. We haven't yet jumped on to the pancake step, because how am I supposed to think of recipes for getting her up to 1/4 of an egg per serving in her tummy three times a day? No, really -- that was a serious question -- does anyone have any suggestions? A serving of cornbread really only has about 1/8th of an egg at most, so I'd have to double the portion size and serve it at breakfast lunch and dinner to get us there. With cupcakes, I'd have to give her even MORE, because each cupcake would have less egg. I'm about ready to say screw it, things have been going fine, let's move on and try the pancakes.

FAQ: What is the rationale behind the introduction of baked egg? Is the idea that she is building up a tolerance to eggs?
Good question, but no, it's not about building up a tolerance to eggs. My lay person's way of explaining this is that baking the eggs at a high temperature ever so slightly changes the shape of the protein that she's allergic to, just enough that when she eats it her body no longer recognizes it as an allergen (i.e., her immune system stops treating the food in question as a dangerous invader that it needs to fight). I'll post a link to the relevant study sometime.

Ugh. Preschool.
Georgia will be old enough to attend in the fall. Aside from anxiety I have about taking that next step of having to trust Georgia and a bunch of other people (teachers, kids, etc.) to keep her safe, I've also been dreading just having the allergy conversation with the folks at the preschools we've been touring. Well, she got accepted to one, and the way it works is you accept and say you're going to attend while you wait to hear back from the others -- apparently this is pretty standard around here. So, we had our first allergy conversation with the preschool that she is, as of today, supposedly attending. (Can you tell I still have my fingers crossed about coming off the wait list at another one? For geographic proximity reasons, that's all.) I'll be positive here and say that the conversation went about as well as one could hope for. The woman giving the tour assured us that it would be no problem, that other children at the school did have food allergies so they were accustomed to dealing with it, and that we could leave EpiPens in the school office or with the classroom teacher, etc.. On the other hand, I have to be honest and say that even when given a pretty good answer, I felt like there was no possible way this woman could understand the fear that an allergy parent has. Because even when EVERYONE (parents, teachers, etc.) all have the best intentions, people sometimes make mistakes. I couldn't help but see the bowls of snack mix in the kindergarten classroom that we walked by and just start to worry. Georgia will be barely 3 years old when she starts preschool. Can I really hope to drill it into her head that she cannot share snacks with other kids? I think they have "snack parents" at this school that trade off bringing food in for snacks. I am hoping that we can get Georgia on a regime of just eating her own personal food rather than the provided snacks, even though the snack parents will be told not to bring things with nuts. Partially because in my opinion I can't really ask them to look out for any ingredients including nuts, fish, and sesame. (Although, how many preschooler snacks have a fish ingredient, right? I wonder about all of the DHA (fish oil) that's getting added to more and more things these days, though. Not sure if Georgia would have a problem with that or not.) But if we have Georgia just eat her own food, then will all of the other parents question why they're even being made to have to deal with my kid's food allergy and therefore just stop reading ingredients? (If she were in 4th grade, that might make sense, but I think at the preschool level it's still important to keep all those sticky pb hands and nut-crumbs, etc. as far away as possible - there's too much risk of contamination and sharing.) Is it time for me to just start trusting a little more, even though that might mean exposing my child to greater risk? I want to protect her (as any parent would). I have to balance that against the idea that I can't protect her from everything forever. Ugh. You can see I'm already going around in circles about this mentally. Broken record here, but can I just say for the one millionth time that it sure would be nice if a test for the severity of my child's allergies existed, so that I might only have to worry that she'll get a mild case of hives at school rather than worrying about something potentially fatal.

Other allergy parents
I feel comfortable discussing food allergies in this forum, but generally speaking I'm uncomfortable with it as a conversation topic. I guess I'm insecure, because I always assume the other person I'm talking to is judging me in some way - either judging me for having a child with food allergies (i.e., they must be assuming it's my fault!) or judging me for how I'm dealing with it (i.e., they probably think I'm being overprotective!). At a recent birthday party, though, it occurred to me that I'm perhaps even more uncomfortable and insecure about discussing food allergies with other food allergy parents. Isn't that awful? Aren't these the very people that should understand where I'm coming from the most? Yes, that is true. And I'm always happy to find them, except that there's no handbook for how to deal with children's food allergies, so I'm always a little bit dumbfounded as to how to address the fact that we don't all deal with allergies the same way. Perhaps the issue is that no one's way is the one and only "right" way, and yet I just so want to be doing the "right" thing, whatever that is. So anyway, at this particular birthday party, the allergy mom was allowing her peanut and tree nut allergic child to dive right into a bakery-bought cupcake with crumbled chocolate cookie as a topping while I was making Georgia have some more fruit and promising her that we'd get her a special treat later in the day instead. (I know, I'm horrible - I really should start bringing my own stuff to these parties, but I keep forgetting and then it's time to head to the party and we're usually running late already. Fortunately she's just young enough to still not really care about missing the treats, so I've been getting away with this.) I just sat there watching this other kid with her cupcake wondering, "Am I doing this all wrong? Am I being too uptight?" The mom in question happens to be a work friend of mine, so I was able to ask her whether her child still had food allergies. Answer - "Yes, but her allergies aren't severe - it would just be like hives or something. " Hmmm...already a different response than what our allergist would ever say. So I said, "But doesn't it make you nervous that one reaction isn't really predictive of the next? You know, that it could be hives last time, but um, something far worse the next?" (Don't want to say anything too terrible around the kids!) Answer - "I didn't know that. Our allergist never told us that." Hmmmm....for various reasons, I already had the impression that their allergist isn't the best. (My friend had even told me as much before.) But this is all very frustrating to me! Why aren't the allergists telling everyone the same set of information? Let me just tell you the two conflicting thoughts going through my head at the time: (1) Ugh! Other allergy parents that are not as vigilant as us are not helping our cause (see preschool discussion above). If she's walking around acting like possible nut ingestion is no big deal (she actually wants to try to "build up a tolerance" for her daughter by exposing her to more and more nuts (at home), despite her allergist having told her that that's not a good idea right now and her husband disagreeing with her as well), then how am I supposed to get other parents and school officials that come into contact with folks like her to understand that when my kid shows up, I expect them to take the whole allergy thing much more seriously?, and (2) Maybe she is the smarter one here. Because maybe if we look at our lifetime happiness levels, and the lifetime happiness levels of our children, her approach of being WAY more relaxed about food allergies and less protective will result in so much less anxiety and mental stress for her and her family that any medical consequences of the increased number of allergic reactions potentially resulting from her approach will be outweighed by the fact that they just didn't worry so much! I mean, I can guarantee you that she's not off thinking about this birthday party right now, writing a blog entry about it! : ) Maybe this is a case where ignorance really is bliss.
Anyway, it's like I want to go with conclusion #2 and just relax, but I can't get my mind to stop slipping back to the, "Yeah, that's all fine and well, but what if she DIES?" thoughts. You know what I mean? Ugh. Again, have I mentioned lately my annoyance with the fact that they cannot yet test for the severity of one's allergies?

Another reaction
Last week I picked up a loaf of bread at our neighborhood food co-op. The ingredients passed inspection, but Georgia ended up having a minor (skin) reaction to it. We think it was sesame, because other available loaves did include sesame as an ingredient. I feel like I should've known better, like my gut was telling me at the time not to buy the loaf because of those other loaves. But what does this mean? That we can only buy from national producers that can give me a better allergen statement, and we can never buy the farmer's market type stuff? Maybe. I don't know. I'll be doing a separate post later on my frustration with labeling.

Okay, that's enough dumping for today.

Operation Pancake

2010-02-16T18:22:00.000-08:00

For anyone who's interested, here's the protocol for phasing baked eggs into Georgia's diet that they sent us home with, verbatim. (I'm not sure why I'm posting this in so much detail, maybe so I'll remember it years from now? The lawyer in me also now feels compelled to add that I'm not posting this as a suggestion that anyone else try it. Talk to your doctor - duh.)

Home Introduction of Baked Egg

It has been determined that it should be safe to introduce egg in a baked form into your child's diet. If your child experiences any possible reaction or concerning symptoms, stop the food and contact us for further instructions. Once your child has clearly tolerated baked goods with 1/8 to 1/4 of egg per serving, you can add similar products up to three servings a day, as well as commercially prepared baked goods that are otherwise safe. The following is a genreal plan for the introduction of baked egg - you can do this as often as once a day to start, although you can also progress as slowly as you like and do this over weeks or months rather than days:

Begin with any baked egg recipe - cookies, cakes, muffins, cupcakes, brownies - and use one egg for a recipe that makes 12-16 servings. Your child can have one full serving to start, therefore will get 1/12 to 1/16 of an egg to start. You can also use a recipe with 2 eggs and give one-half serving.

If there is no reaction to these products, you can increase so that your child can get up to 1/4 egg per servings.

If these products are tolerated with no signs of a reaction, you child may have them up to 3 servings a day.

After two to three months, you may introduce pancakes or waffles.

You can then contact us to discuss the possibility of introducing straight egg if you desire. Up until this point, you also need to continue to avoid mayonnaise, custards, ice creams, meringues, and other foods with concentrated, less cooked eggs.

More weirdness...

2010-02-14T18:13:00.000-08:00

Just writing to say that in the past couple of weeks we've had a few more mild skin reactions around here that are apparently from kisses.
Like, Joe went to a business lunch and had crab cakes, later came home and gave Georgia a kiss hello, and voila, big red marks.
None of these incidents has been any big deal, but still it's disconcerting. I don't know if she's somehow getting more sensitive, if we've gotten too lax, or if we've just been unlucky.
The moral of the story is: we're now doing a better job of brushing our teeth after eating any of Georgia's allergens.

Hmmm...that was weird

2010-01-27T23:34:00.000-08:00

Georgia had a mild reaction to something tonight. We're pretty sure it was from Joe kissing her (a lot) when he got home from work. This is not the first time that she's had problems from kisses. She did not seem at all phased (or even notice that she was having a reaction), but we gradually noticed the appearance of red blotches and tiny hives on her face knee caps.

Isn't that crazy? Someone eats something -- hours earlier -- then kisses her face, and she ends up with hives on her knee caps of all places.

So the great mystery is what food it was. Joe didn't think he had eaten any allergens, but he did have a pizza for lunch that included pine nuts. I'm off to google whether pine nuts are a tree nut. I thought they were considered a seed and are okay for Georgia to eat?

If anyone is reading this and knows the answer, please leave a comment or email me. Gracias.

UPDATE: Okay, I'm feeling like a lousy allergy mom, because apparently pine nuts are a tree nut, so I should have known that. I definitely would have looked into that before feeding her anything with pine nuts (like pesto), but I did not think that Joe eating a pizza 5 hours before kissing his daughter would cause any problems. Ugh.

Georgia's egg challenge (a.k.a., "worst playdate ever")

2010-01-13T19:00:00.000-08:00

So, here's the rest of the story about yesterday's failed egg challenge at the allergist's office.

First of all, in a stroke of amazing coincidence, one of my best friends, Maggie, and her family were there at the same time that we were. I mean, what are the chances that she, who lives in the suburbs, would get an appointment to bring her son to the doctor in the city, at the same time and on the same day and in the same pediatric allergy practice as us? Do you have any idea how long it usually takes to even get an appointment there? Given the expected long length of these appointments (thus requiring backup help for child entertainment), and the importance of the information to be conveyed and the opportunity to ask questions, both of our husbands were also in attendance at these appointments, as was Maggie's daughter, Anna, a favorite playmate of Georgia's. Beforehand we joked about how hard it can be in our busy lives to find the time to get together and how maybe we should just meet up like this more often. Of course, that was before Georgia failed her egg challenge and Maggie's son Abe got sent home with a diagnosis of a peanut allergy! I'm joking about it being the worst playdate ever, though, because it was still nice to see familiar faces and for Georgia to have someone to play with for a while during the FIVE hours that we were there, most of it cooped up in a little exam room.

I don't want this to be the wordiest blog post ever, so I'm going to cut to the conclusion and then back up and give you the recap in bullet point form. Conclusion: Georgia had an allergic reaction during her egg challenge, so she's still considered allergic to eggs, but since the reaction was (a) relatively slow to develop, (b) not extremely severe, and (c) occurred after eating a pretty large amount of egg (about a full egg and a half), they think that she is "well on her way" to outgrowing egg allergy and that she may be able to tolerate eggs in baked goods. We were sent home with specific instructions about how to safely attempt to phase baked egg into her diet. (More on that in a later post.)

Now, the play by play:

Arrive. They take Georgia's vitals. We hand over the 1 egg scrambled and 1 piece of french toast prepared with 1 egg that we had been instructed to bring along.
Challenge consists of feeding Georgia ever-increasing quantities of this food at 15 minute timed intervals. After each interval, her skin, breathing and blood pressure are checked before more food is given.
First "dose" = 10% = about 2 bites of a piece of french toast.
Next "dose" = 20% = about 4 bites.
She seemed to be doing great, showing no signs of a reaction to the egg. We thought she'd pass with flying colors and that we'd get out early.
More "doses" of food. Eventually they added about a teaspoon of scrambled egg to the mix.
Last "dose" = she was told to eat the remainder, so a few more bites of french toast and a couple of bites of scrambled egg. We were then put on a half hour wait period, so we went out to the waiting room with Georgia's friend Anna to give the girls some more space to run around and toys to play with. That's when things started to get weird.
Anna was getting into the toys. Georgia was playing well at first, but then we noticed that she was coughing every few minutes - not like a coughing fit, more like a clear your throat a few times type of thing. Hmmm, we thought....probably nothing...just coincidental timing...maybe she was coming down with a cold? Her cheeks, which were a bit pink before the food challenge even started (due to the cold winter winds and uber-dry heat of our home), seemed to be growing redder, but we wondered if we were imagining that or if she was just getting flushed from playing around. She started rubbing her ears, which also grew red, but it took us a while to notice that. The truly odd part was that she kept saying, "Can I go to sleep on those chairs?" and then went over and laid herself across a few of the waiting room chairs and began sucking on her fingers, her normal self-soothing routine for going to sleep. It wasn't even close to her nap time.
To show you just how convinced we were going into the egg challenge that she'd pass it, we somehow deluded ourselves into the belief that all of these symptoms meant an oncoming cold, not an allergic reaction. We took her back to the exam room to be checked out.
They agreed that it was theoretically possible that this was a cold starting. They decided to wait a bit more before giving her any Benadryl to stop the reaction, to see if it would progress (like an allergic reaction) or not (like a cold, which would obviously take much longer to develop and worsen).
By about 15 minutes later, she had broken out in an eczema flare over most of her body - her chest, back, stomach, legs, hands, wrists, etc. She had hives on her hips, knee caps, wrists, and maybe some tiny ones a few other places. She was occasionally sneezing. She was scratching herself but not complaining of being itchy. Actually, she seemed fairly oblivious to all of this and did not complain of being bothered by the reaction, even though she was acting kind of weird
Benadryl was given to stop the reaction. A 1 hour wait period began, so that they could make sure that the reaction had subsided before letting us go. It took a while for the symptoms to subside, but they eventually did.
We went home. Georgia ate lunch and went down for her nap. She slept so long we eventually had to wake her up to keep her on some semblance of a normal schedule. By the time she woke up from her nap, her skin looked much better. By her bedtime, her cheeks weren't even pink. You never would guess that any of this had happened. We gave her 1 tsp of Benadryl at bedtime as instructed by the allergist.

So, there you have it. In retrospect, it is kind of funny that we would even kid ourselves into thinking that she had spontaneously caught a cold in the middle of her allergist appointment, seeing as how we were there for a food challenge with the known possibility of an allergic reaction. Duh! Call it hopeful optimism or denial, whichever you prefer.

The egg challenge was a big bummer in a number of respects. We really had been hoping to cross at least one of Georgia's food allergies off of the list, just to make it more manageable. Also, it is never fun to witness your own child going through something uncomfortable (and potentially dangerous) like an allergic reaction, not just because of the presently occurring reaction, but also because of what it means for her future. Although I'm sure she'll learn to live with her allergies, we just so wish that she didn't have to grow up dealing with any of this stuff.

So, that was the bad part. However, as mentioned above, based on Georgia's reaction yesterday they think she may be able to tolerate baked eggs. From a lifestyle perspective, this is hugely positive news. As my sister pointed out, two year olds are a lot more likely to be running across cupcakes and cookies than scrambled eggs.

More on the "Baked Egg Study" and the doctor's protocol for introducing baked eggs into Georgia's diet in a later post. Bye for now!

Don't Count Your Chickens Before They Hatch

2010-01-13T07:13:00.001-08:00

Or your eggs before you've eaten them, as the case may be.

So much for my motherly intuition! Georgia failed her egg challenge. (Um, did you read my last post? Well, don't I look like the fool!)

Silver lining here is that she may be able to eat eggs in baked goods, so at least some good news came out of yesterday's appointment.

Full story later when I have time to report.

IS EVERYONE AS EXCITED AS I AM?! No? Okay, anyway...

2010-01-11T19:04:00.000-08:00

Scrambled eggs and french toast? Bring it.

Tomorrow is the egg challenge, and I'm so excited!

We've tried to prep Georgia with just enough facts to prepare her for what's in store. For a two year old, that means keeping it really simple. I know she's soaking it all in, though, since she started telling the grocery store clerk about her allergist appointment as we were checking out with our carton of eggs.

Also, I don't want to scare her about it. But if anything, my concern has been more the opposite -- not trying to hype it up too much. I've had to control the urge to express extreme excitement, as in, "We'll go out for cupcakes afterwards to celebrate!" I'm so confident that tomorrow is going to go well that I kind of have to remind myself that there is at least the possibility that she'll have an allergic reaction.

Here's to hoping that my motherly intuition is spot on in this case.

Fluarix Vaccine

2009-12-30T20:21:00.000-08:00

As mentioned in my prior post, for egg allergy reasons, Georgia can't get the H1N1 vaccine right now. Nor is she eligible for the regular seasonal flu vaccine.

But! (--and this is the good part--) We were able to get her an alternative type of seasonal flu vaccine, administered at the allergist's office. It's called Fluarix, and I'm no doctor, but it is my understanding that in the U.S. it has been FDA approved for adults, but in the case of young children it requires a doctor's prescription. Also, I think it has been approved for both adults and children in Europe for some time now. The allergist's office sent us a thorough letter explaining this drug, and I'm kicking myself because I can't find it now. I believe the drug still contains egg proteins (like most flu vaccines), but perhaps it contains less egg, which is why our allergist is okay with giving it to patients like Georgia? (Again, kicking myself for not being better able to explain this right now, but I swear it all made perfect sense in the letter. If I ever find it I will update this post with more information.)

Anyway, if your child has tested positive for an egg allergy but has never had an anaphylactic reaction to eggs, it might be something to ask your allergist about.

Now, as for the actual shots? I was under prepared. I knew they wanted to give Georgia a partial dose and then have us wait to make sure she had no reaction before giving her the remainder of the dose. I thought we were talking about a 5 minute wait or something. Turns out there was a wait at the allergist's office before our appointment even started, then there was the first shot in her right thigh, followed by a half hour wait, then the second shot in her left thigh, followed by another half hour wait, and then we were dismissed. Whew! Had I known, I would've packed a couple more books to entertain my two year old. Oops.

It all went as well as can be expected, although I did feel bad for Georgia heading back in for the second shot. I mean, the first one was like the kid didn't know exactly what was coming, but c'mon -- she's no idiot. By the time we were walking back in for the second shot, she knew what to expect and wasn't happy about it. There weren't too many tears, though.

Another thing I didn't know about until after we got there: We had to return 4 weeks later for yet another dosage -- the booster that's apparently required for any children getting their first seasonal flu vaccination. She was more scared walking in for the booster, because she knew a "pinch" was coming (that's what she calls shots these days). But it was nothing that an Ernie and a Cookie Monster sticker couldn't fix.

Thoughts on H1N1 and French Toast

2009-12-27T19:31:00.000-08:00

Unless you're living in a cave, you know that flu scare is in full swing this year. There's the seasonal flu, and then the dreaded H1N1, a.k.a. swine flu, and if you were pregnant this year (like I was), or have a baby under six months old at home (like we do now), then you're officially high risk and should probably get yourself and your whole fam-damily vaccinated a.s.a.p.

How do I sum up my conundrum succinctly?

-Georgia's allergic to eggs, so she can't get the regular seasonal or swine flu vaccines;
-But she's testing so low on the RAST scale that she's scheduled for a food challenge for eggs in January;

-In the meantime, we've got an infant at home that we should be going the extra mile to protect from swine flu.
-Basically, this leaves me wondering, what is the greater risk? Georgia having an allergic reaction to eggs, or June getting the swine flu?

You see what I'm saying? I mean, we're following doctors' orders and all, so we are NOT feeding Georgia eggs on our own - we are waiting for the medically supervised food challenge - and we are not getting her swine flu vaccinated until she passes the food challenge. However, I'm just saying that we sometimes wonder whether this protocol makes 100% sense, given the possible dire consequence of June getting the swine flu, and given the fact that the allergists must believe that Georgia's probably not allergic to eggs at this point, otherwise they wouldn't have recommended that she do the food challenge.

In semi-related news, they called from the allergist's office to say that we are supposed to bring our own food to the food challenge, and specifically that we are supposed to make FRENCH TOAST to bring. Something about that just cracked me up. "Hi, I'm just calling to remind you of your daughter's appointment and to make sure that you know how to cook french toast. Will that be a problem?"

Then, a few days later, we show up at my sister's house for Christmas Eve brunch, and what is she serving but french toast! Suddenly it just seemed so odd to be heading off to a doctor's appointment in January to feed Georgia french toast, when I could've just given her some right then and there on the spot.

Again, we did not do that. We are following the doctor's instructions. I do not recommend that anyone else out there perform food challenges at home with respect to allergens that they've been told to avoid. All I'm saying is.......well, you can appreciate the weirdness of this stuff, right? The oddity of going through such formalities (like a 4 hour doctor's appointment) to eat french toast, when it's right there available on your table.

Christmas Morning Reaction

2009-12-26T19:53:00.000-08:00

Just a brief note to record the fact that Georgia had some kind of contact irritation or allergic reaction on Christmas morning. Not sure what it was from, but she broke out in a red rash with hives all over her face, mostly on one side, and had to have some Benadryl.

She had eaten Dum Dums and Tootsie Rolls from her stocking, both of which I think were safe.
Not sure if she got kisses from someone who had been eating something unsafe or what exactly happened? This one will remain a mystery.

Since I'm on the topic of holidays, I just want to add that in my opinion there are too many allergen-laden foods in our house right now. I know that some "allergy moms" are super strict with their families when it comes to holidays and food. We, however, are not a "strict prohibition" or "zero tolerance" household, which is to say that we generally allow in foods that Georgia is allergic to and just police them. That said, we try to remain nut free and sesame free as much as possible. We do not buy these things and bring them into our home. This helps to avoid pantry mix ups, problem crumbs, cross contamination, and that kind of thing. (We are not as strict with eggs - we still keep eggs in the house and some processed foods made with eggs.) With family in town, and neighbors and friends having dropped off a few food gifts, I suddenly feel like we've got about 10-12 off limits foods floating around. Not a huge big deal, but I will be more comfortable when we're back to our usual ways. I tend to view these ingredients as threats to my child's health and safety; I think that others just view them as "things she can't have." Anyway, Joe may have to take a few of these items to the office with him tomorrow.

A date with the devil(ed)

2009-11-16T22:05:00.000-08:00

Finally! An appointment!

January 12th.

Bring on the eggs.

My bets are on Georgia.

Waiting...

2009-11-10T20:35:00.000-08:00

The good news: Based on Georgia's latest RAST score, she's eligible to do a food challenge for eggs, and if she passes, she'll be declared no longer allergic to eggs and may eat them to her heart's content. Yea!

The bad news: This food challenge has to be done supervised, at the allergist's office. Fine. But we can't get an appointment! All slots are booked up for November and December, and we are on a waiting list. A waiting list to try eating some eggs???? Argh!

A little frustrating. But I suppose, if you have been avoiding eggs this long, what's another couple of months? No biggie.

We are following the doctor's orders and not trying this at home. She'll just have to wait until next holiday season for pumpkin pie and Christmas cookies, I guess.

Funny Halloween Exchange

2009-11-02T09:43:00.000-08:00

Kid: "Trick or Treat!"

Us: "Here ya go." (Drop candy in bag.)

Kid: "Do you have any Reese's?"

Us: (Lauging) "Oh, specific requests, eh? We haven't gotten any specific requests yet."

His parent: (Hollering up from the sidewalk) "Oh, sorry! His school wouldn't allow anyone to bring candy with nuts for their Halloween parade, so he's been asking everyone for Reese's." (Gives the "can you believe it?" head nod and partial eye roll.)

Us: "Oh." (Smiling.)

They were gone before we could react with any kind of witty response, or at least interject that it's just fine by us if his school doesn't allow nut-laden Halloween candy. It's all for the best, though, since um, Halloween is kind of all about the candy and having a good time, not hearing about your neighbor's child's medical history while you're out trick or treating. (duh.) : )

No Fright Night Here

2009-11-01T08:41:00.000-08:00

Happy (belated) Halloween!

From what I can tell from perusing the Internet, Halloween tends to freak allergy parents out a bit. We've been lucky so far, and it has not been any big deal.

Halloween '07 (Georgia age 2 months): Dressed her up in a costume. Took photos. She wasn't even eating solids, and we had no knowledge of her food allergies anyway.

Halloween '08 (Georgia age 1): Dressed her up. Took photos. Like most 1 year olds, she had no idea about the trick or treating or candy. Didn't feel like she missed a thing.

Halloween '09 (Georgia age 2): Our first year with a toddler running around a Halloween party. Our first year trick or treating with her. I'm beginning to see where the parental nerves come from with this stuff. Our daughter's still at an age where it wasn't that big of a deal, though. We hit only 5 houses while trick or treating and were able to control all of the candy consumption.

Eek! An allergy mom's worst nightmare: our child, having run off at a party, scooping up something to eat off the floor! Fortunately it was just a grape in this case. Shwew!

The best part of Halloween (from an allergy perspective, I'm saying) was that she made great strides in learning to ask us which foods she can and cannot eat. We practiced at home with her. It was rather cute seeing her hold up each piece of her loot and ask, "Is this safe for me?"

I also tried to buy allergen friendly candy to hand out, in case any of the trick or treaters coming to our place happened to have food allergies. Who knows?

We went with Swedish Fish, Sour Patch Kids, and Smarties. (Not my personal favorites, I have to say!)

This (Halloween with a food allergic child, that is) is just another one of those things that's going to continue to evolve year by year, I can tell. Right now I could sit here and tell you that I don't understand what all of the fuss is about. But then again, I don't have an 8 year old trading candy with her friends at school and that kind of thing to deal with. I'm sure my perspective is going to change!

Oops. Minor Bib Incident.

2009-10-29T20:14:00.000-07:00

I wasn't there at the time, but Georgia had a very mild allergic reaction (some hives on her face) to skin contact with a bit of food residue on a bib that she borrowed during a playdate. The bib was the style that slips on over your head (kind of like a tea towel with a head hole cut out of it), so it probably just grazed her cheeks. We think the culprit was either sesame (from hummus) or some peanut butter. The bib's owner suspects hummus. Of course she keeps their bibs clean to normal standards, though, so she jokingly inquired when we discussed the incident later, "Is Georgia allergic to sesame vapors or something?"

I agree -- it is kind of astounding how sensitive Georgia's skin can be. Fortunately, the hives didn't even require any Benadryl and disappeared within 15 minutes. But this incident was a good reminder of how careful we have to be to prevent Georgia's ingestion of allergens.

The silver lining here is that two more adults have now witnessed Georgia having some kind of allergic reaction, thus proving that I'm not crazy. Well, you know what I mean -- it's not that I thought I was crazy, but sometimes I wonder if other people think that Joe and I are just making of all of this allergy stuff up!

Allergist Update: RAST Results

2009-10-23T21:30:00.000-07:00

The allergist called with Georgia's RAST test results today - woo-hoo! Information!

(Bummer that I was not home and Joe answered the phone, because I wanted to hear it all first hand. I was like, "Tell me everything they said, verbatim! Every word. Did you take notes?" I'm a dork, I know.)

Anyway, great news:

Georgia's RAST score for egg is low enough that she is now eligible to do a supervised egg challenge in the doctor's office. If she passes the egg challenge, she'll be cleared to eat eggs!
Her poppy seed and chick pea scores are low enough that we are allowed to try re-introducing those foods to her at home. On the subject of poppy seed allergy: interestingly, an email that I had written to the allergist at the time of Georgia's supposed poppy seed reaction revealed that she had also been eating fish at that meal. (She used to tolerate fish but started having allergic reactions to it within the last year.) So, it is now believed that what I thought was a poppy seed reaction at the time, (since in my mind it couldn't have been the fish, since she'd eaten it many times before with no problems), was actually a reaction to the salmon that she had been eating.

Her peanut, tree nut, sesame and fish scores are all still too high for her to do food challenges on those. Maybe next year.... Fingers crossed that the scores will keep coming down.

So, if we assume for the sake of argument that Georgia is able to pass the egg challenge and successfully reintroduce poppy seeds and chick peas to her diet, then that means our list will go from:

Peanuts and tree nuts, sesame, fish, shellfish, poppy seeds, chick peas, and eggs

-down to-

Peanuts and tree nuts, sesame, fish and shellfish

(Which for the sake of simplicity could be summed up as: Nuts, Sesame, Fish. Doesn't that sound like a MUCH shorter list than what we have been dealing with? I think so.)

All in all, a great report.

More Waiting...

2009-10-20T22:00:00.000-07:00

Well, things went fine at the allergist, but the appointment was a bit anticlimactic.

I know, I'm an idiot, because what was I expecting? The whole mystery to be solved?

Anyway, I thought they'd be doing skin testing again, but it was just blood (RAST) testing, which means that we'll have to wait about a week for the results.

Happy Allergist Eve!

2009-10-19T12:54:00.000-07:00

I feel like a kid on the night before Christmas. Tomorrow we go back to the allergist for Georgia's annual appointment.

Annual. So slooooow. I understand the protocol, but I just wish these things rolled around more often, because we are always craving additional information.

Tomorrow we begin to find out more - yea!

Sweet Cheeks. Zits and All.

2009-09-24T13:32:00.000-07:00

June has baby acne right now. Has anyone ever been so happy to see baby acne on their child as I am?

It might mean nothing. She might end up with eczema and food allergies, who knows. But when Georgia was around June's age, she had what we thought was baby acne. (At least that's what the pediatrician said.) Except it kept getting bigger. And worse. Most of her face was red and raw, poor thing. It was bad enough once that I remember going to the grocery store and wondering if the other shoppers were noticing and questioning what was wrong with my daughter's face.

Anyway, turns out it was eczema. So the fact that June instead has what appears to be totally normal looking baby acne? Well, it excites me. Because nothing on her looks like eczema yet.

(Fingers crossed that it stays that way and that I haven't just jinxed it all by discussing it here!)

Momversation

2009-09-23T12:58:00.000-07:00

I usually love the website Momversation.com. It's a fun break in my day to see what their panelists are discussing.

Today they tackled food allergies. I was nervous as I hit play. Would this be just another uninformed bash of kids with food allergies and their cuh-razy parents?

All in all, it wasn't bad, but I really wish they would've included a panelist or guest panelist that is the parent of an allergic child.

I think that some of the panelists came off looking a little glib, but I'll give them the benefit of the doubt and say that that might just be the result of the way these little clips are edited.

At least this episode wasn't filled with the hateful, misguided opinions on food allergies and nut bans that I've seen in so many articles, though, which is why I've gone ahead and linked to the video here. It will be interesting to see what the Momversation viewership has to say in the comments section, though. Fingers crossed that the meanies keep their thoughts to themselves.

Allergies? What Allergies?

2009-09-18T12:52:00.000-07:00

We welcomed our second child into the world on August 18th.

Amazing how this has managed to take my mind off of anything related to food allergies.

It has been a nice reprieve.

Maybe I was starting to let the annoyance and worry overtake my mind too much? I won't go so far as to use the word "obsessed," but maybe I was borderline??? Hope not.

Anyway, point is that life marches on, allergies or not. Which is great.

They're just one thing on the list. But now I must attend to a higher priority on the list: sleep.

Happy Birthday (Cake)!

2009-08-10T20:45:00.000-07:00

For Christmas, we received a wonderful cookbook full of allergen-free recipes from my sister in law. As excited as I was to receive and pore over this thoughtful gift, I must admit that I've been delinquent in actually putting it to use. I think this has much to do with the fact that, lucky for us, Georgia was young enough this year not to be aware of, or begging for, any of the yummy foods that she was missing out on due to allergies. And, of course, the reality is that she can still eat the vast majority of what we normally eat without any recipe adjustments. But when her birthday rolled around, I figured it was time to break out the book and get to cooking her an eggless cake. Somehow even very young children living an otherwise cake-free life know that on birthdays there had better be a cake, candles, and ice cream! So, here goes nothing....

Barefoot, pregnant, and doing Martha proud. That's the picture of what the cake is supposed to turn out like.

The finished product. Note: the guitars are not part of the allergen-free recipe, but rather a fulfillment of our toddler's cake decorating wishes, (as inspired by another mom's creative avoidance of overly-complicated icing requests).

But did it taste okay?

Survey says: YES!

Here is the book I used:

Note that although the cover says "no eggs, no dairy, no nuts, no gluten," each recipe can be tweaked to take out as many of those offending ingredients as you need to. I did not make the dairy and gluten free version of this cake, but that can be done.

REVIEW:
Quality of cookbook: Excellent. Useful info, great pictures, and easy to follow recipes.

Quality of cake: Very good. No one was turning it down, but I'm not gonna lie; in a side by side comparison with Betty Crocker or Duncan Hines, it would probably not fare well. The cake was quite tasty and I would make it again, but compared to other cakes I've had, it was a bit on the drier and denser side. (I wonder if I cooked it a few minutes too long?)

Quality of icing: Excellent. But I wish there had been more. If I make this again, I will double the icing recipe, so that there's no struggle in icing each layer, plus the top and sides.

Blood Test Results from Food Allergy Study

2009-08-08T18:45:00.000-07:00

They told us it would take about 2 months to get back the blood test results from our participation in the food allergy study, and they were true to their word.

This is science-y stuff, so I'm not even going to attempt to summarize or paraphrase. I'm just typing in excerpts of what they mailed us now:

Interpretation of Blood Test Results

...The purpose of this testing is for an epidemiologic study and not for diagnosis.

IgE is the antibody that causes immediate hypersensitivity to proteins, such as foods or airborne allergens. The total IgE value is a general indicator of how "allergic" a patient is. For example, patients with hay fever (allergic rhinitis) or eczema (atopic dermatitis) may have an elevated IgE level. For total IgE, the lower limit of detection is 2.0kU/L and the upper limit is 5000 kU/L.

The blood tests called "CAP-RASTs" determine the quantity of IgE to a specific allergen. For specific IgE, the lower limit of detection is 0.1 kUA/L., and the upper limit is 100 kUA/L.. Values outside this range will be noted as "<0.1>100 kUA/L." Please note that CAP-RASTs, especially to foods, can be falsely positive. The main limitation of these tests is that a positive result does NOT necessarily mean that the food will trigger symptoms...

POSITIVE BLOOD TEST ALONE DOES NOT EQUAL DIAGNOSIS OF ALLERGY

Sometimes, CAP-RASTs can also lead to false-negative results (although a negative test result generally rules out an allergy)...

In addition, the blood test results do not reflect the severity of an allergy. A higher value does not mean that a reaction will be more severe. Rather, the value reflects the probability that you or your child may be allergic to that particular allergen: the higher the value, the more likely that the result is a true positive....

	Mother	Father	Daughter
Allergen tested	Value (kU/L)	Value (kU/L)	Value (kU/L)
Alternaria (mold)	<0.1	1.300	<0.1
Cat Dander	<0.1	<0.1	0.417
Cockroach	0.143	<0.1	0.102
Codfish	<0.1	<0.1	20.871
Dog Dander	<0.1	<0.1	0.110
Dust Mite 1 (Df)	<0.1	1.397	<0.1
Dust Mite 2 (Dp)	<0.1	0.872	<0.1
Egg White	<0.1	<0.1	0.887
Milk, Cow	<0.1	<0.1	0.672
Peanut	<0.1	<0.1	4.182
Sesame	<0.1	<0.1	6.615
Shrimp	0.236	<0.1	<0.1
Soy	<0.1	<0.1	1.148
Total IgE	16.151	23.727	108.137
Walnut	<0.1	<0.1	6.049
Wheat	<0.1	<0.1	4.020

-------------------------------------------------------------------------------------------------------------
Okay - me here again. So, my thoughts on what we can take away from any of this:

--One more thing to keep in mind when looking at these results - you can't compare CAP-RAST scores for different allergens and infer that equivalent scores mean equivalent likelihood of being allergic (i.e., true positives). In other words, a 4.0 on peanut may not mean the same thing as a 4.0 on wheat.

--Obviously, we'll have to wait to get in to see the doc this fall for further testing and discussion, but Georgia's egg test result confirms my suspicion that she may have outgrown this allergy. I don't really know how to judge it, but that number looks low to me! I believe it's lower than her score from 2008, which is great news.

--Definitely true what they say about false positives, because I eat shrimp with no problems, and Georgia consumes milk, wheat and soy with no problems as far as we can tell.

--Based on what little I know of Peanut CAP-RAST scores, I am pleased with Georgia's score on that one. It's definitely well below the 95% certainty threshhold. It may indicate that even if she's allergic now that she's among the 20% of people who have a decent chance of outgrowing a peanut allergy.

--Bummer about the codfish score for Georgia. Her reactions to fish started around February or March, which was so weird, because she had been eating salmon with no problem and loving it for about 6 months prior to that. I wonder if or when we can find out which fish she's allergic to? We'll have to ask the doctor about that. I hope she doesn't have to avoid ALL fish forever.

Stuff that Bugs Me

2009-08-07T12:19:00.000-07:00

Just saw another online "article" (if you can even call it journalism) about how there's too much hype these days about food allergies....(yawn).

Of course, like an idiot, I also read some of the reader comments.

Here's a common one that gets me, personally: the people that criticize parents of food allergic children, basically saying one of two things:
1) all kids need to play outside more, and if they did, then there wouldn't be so many food allergic children; and
2) if only you fed your kid real food and did some cooking instead of filling them up with pop tarts, fruit snacks, and every other processed creation under the sun, then there wouldn't be so many food allergic children.
[Note: both #1 and #2 boil down to, "I have no sympathy for your child's condition, because it's all your fault.]

Thanks.

Okay, I'm not even saying that there's not a shred of truth in either #1 or #2, because maybe there is, at some societal level, over a number of decades. It seems plausible to me that the American lifestyle and abundance of genetically modified, processed foods in our diets might have some connection to food allergies.

But at the individualized level? Well, that just pisses me off. My daughter has food allergies and she's not quite two yet. I'm sorry, was I supposed to send her out on her own to play outside more during the first 6 months of her life? Especially on the snowy days, right? Babies love that.

And as for the food? If anything, I'm the mom that others make fun of for trying too hard to avoid processed crap. (Not that our family succeeds on that front entirely, but I'm just saying, we at least make an effort.) I kind of pride myself on having avoided pretty much all food (or food-like products, as I sometimes like to call them) that are specifically marketed to little kids. Also, we certainly don't do everything organic, but we do buy a lot of organic foods. I try to cook at home as much as possible. We enjoy buying from the farmer's market all summer. And when our daughter was younger, we boiled foods and made a great deal (but admittedly not all) of her pureed baby food from scratch, for Pete's sake. Oh, and p.s., I breastfed for 13 months, another thing that is supposedly linked to a lower risk of allergies. Due to being diagnosed with an egg allergy around age 1, my daughter basically only knows cookies and cupcakes from books, so excuse me if I'm just a *wee* bit sensitive to the idea that it was my stuffing her with pop tarts that gave her food allergies.

Whew! Bitter rant over. Okay, I feel better now.

I Wonder...

2009-08-02T22:24:00.000-07:00

11 days until my due date.

I wonder if this child will have food allergies or not? So curious about that.

We pray that it will not.

They tell me not to do anything differently - not to eat or behave differently in this pregnancy versus the last. They say there's no good evidence yet that any of it matters.

And yet I find myself wondering what the cause could be. Should I not eat this hummus sandwich from Cosi? What about the peanut m&m's from the vending machine at work that I could not resist - should I not have eaten those? (Beyond the list of other reasons that one might want to avoid them, of course.) What about this soda? Is it the secret evil? What about this supposedly environmentally friendly kitchen cleaner - is it okay to use?

You see how messed up I have become? I'm telling you, I think you would be the same way. It's all such a mental game, these food allergies.

A confession: I desperately want our second child not to have food allergies. First and foremost for its own sake - for its health. But also so people won't think Georgia's allergies are "my fault." That they're something I caused, or something I invented.

Selfish of me to feel that way, I guess. Rather insecure and defensive, I know. But that's how I feel a lot of the time; that's where I am right now.

Hmm.....I wonder... I wonder...

That's what friends are for

2009-07-31T19:20:00.000-07:00

In connection with the whole letter to Congress thing mentioned in the previous post, I recently exchanged emails with a good friend of mine who is a lifelong food allergy sufferer.

She really has no idea what a positive source of inspiration and comfort she is for me when it comes to dealing with Georgia's food allergies. When my mind starts swirling with all of this stuff, or starts slipping towards greater anxiety, I can remind myself of my friend, who is of course a normal, happy, well adjusted adult despite having to put up with food allergies. Also, she has had multiple scares during her life - awful incidents requiring EpiPen injenctions and trips to the ER. You would think that would make me feel worse, but the fact that she has always come out okay is what makes me feel better. That's the part I choose to focus on.

Anyway, I'll share a few lines of her email, and you'll know why this person helps me stay grounded:

"For what it is worth... ...it will always be harder for you than it is for her."

"The allergies are just going to be part of her life, and she won't know life without them-- I know that sounds hard for a parent, but to her it is all she will know and she will learn to adapt."

Another tip she gave me that brought a smile to my face was to always pack Georgia a good lunch for school field trips, so that she wouldn't have to eat a soggy turkey sandwich. To me this highlighted an interesting difference in perspective -- as the parent, you may be worrying about impending doom, when all your kid is really concerned with is avoiding a soggy substitute box lunch.

Friendship is a two way street, though. While I may not be giving back to my friend as much as I feel like I'm receiving from her right now, she did at least confess to me that hearing about our family's experience is making her see her own food allergies from her mom's perspective for the first time. So, there is that, which is nice.

Just Sent a Letter to Congress...

2009-07-28T19:13:00.000-07:00

...via the Food Allergy Initiative's website. The letter requests increased federal funding for food allergy research.

Here's the online form for submission:
http://www.votervoice.net/core.aspx?Screen=Alert&IssueID=17107&SessionID=%24AID%3d1048%3aSITEID%3d-1%3aVV_CULTURE%3den-us%3aAPP%3dGAC%24

Thought I'd link it here.

Reflecting on a year

2009-07-27T21:04:00.000-07:00

It's been just about a year since Georgia's first known allergic reaction, which was to a bite of hummus. (I say "known" only because there are some of her more serious eczema outbreaks when she was younger that I now wonder if were due to foods that I was eating that she was getting through breastmilk.)

Anyway, I thought I should pause and reflect on our first year of dealing with a food allergic child. What the surprises have been, etc.

It feels like it has been a lot longer than a year. Feels like it's been from the beginning but it hasn't.

The wait to get in to see the allergist felt interminably long.

I can't believe what a crazy restricted diet she was on for about 2 months while we were waiting to get in for that first allergist appointment. Felt like a caveman's diet.

Given Georgia's young age, and our ability to control her diet 100%, I think the biggest impacts on our life so far have been: (1) When we go out (for errands, outings, whatever) we tend to take food with us way more often than other parents of a toddler her age, just in case; and (2) We hardly ever eat out at restaurants with her - to us it's just not worth the hassle most of the time. (So, yeah, I guess we're not the "cool" parents who haven't let having a child impact their own social life at all (the ones that many childless people I know seem to always think of as the "best" or most laid back). Oh well!)

[As to (1) and (2) -- both seem silly if you consider the multitude of foods that Georgia CAN eat. Problem is knowing what's in everything, which is why it's just so much more convenient to us to pack stuff or eat at home than to have to constantly ask questions or read labels when we're out.]

We've been lucky that Georgia has had no serious allergic reactions. What I wish people could understand is that even the mild ones are not fun to experience. They're scary.

I think every first time parent goes through those, "is the baby dead?" moments when they just have to go in and check on the sleeping child to put their mind at ease. I think we experienced (and still experience) that syndrome WAY worse than the average parent. (It stems from the fact that we've been told that anaphylaxis can kick in up to 2 hours after exposure to a food, and when you're dealing with a kid who sleeps as much as Georgia did this year, well, there's not always room for a 2 hour window between eating and sleeping.) I know it's probably a ridiculous, unfounded fear, but it crops up now and then.

I guess I knew before we were thrust into the fold that food allergies were a "hot topic." But I had no idea how much misinformation is out there. How strongly opinionated people can be about this stuff. How much negativity there often is in the media's coverage of the issue. How truly unsympathetic, and frankly, downright cruel, people can be when leaving comments on the Internet (to articles or blog posts they've read). I have got to learn not to let those people get to me, or just not to read the comments! (BTW, when it comes to this stuff, Joe is SO much better than I am at not giving a hoot what anyone else thinks. He would never let such hurtful comments get to him.)

I've noticed a pattern. As vigilant as we try to be, we ebb and flow. We go for a period where Georgia has no allergic reaction to anything and slowly we become just a little bit more lax -- a litte more willing to let her eat something without asking first what's in it and instead going with our assumption that it's okay. And then she has some kind of reaction, and suddenly we're all hyper-vigilant again. [That's normal, right? I imagine that pattern will continue forever as we, and eventually she, try to always strike the right balance between safety and unnecessary caution.]

To our surprise, we find the sesame allergy to be the most annoying to deal with.

Another surprise: We wish they could come up with an allergy test for severity almost as much as we wish they could come up with a cure. Of course a cure would be ideal, but if that's not possible in the near term future, then please, oh please, scientists, work on a severity test.

This is stating the obvious after having reflected on all of the above, but it's remarkable after one year of dealing with food allergies how much of a head game allergies can create. (At least for the parents. I don't ever want this stuff to stress Georgia out as much as it can stress us out.) The physical part of food allergies is so manageable; the mental part sometimes requires more work.

Doing this all wrong

2009-07-26T03:58:00.000-07:00

Recently I saw a blurb on the Allergymoms.com blog about helping adults "get" food allergies, and this line jumped out at me,

"My experience is that it’s better to provide published information rather than explaining food allergies in your own words."

Oops. So, yeah, I can see why that's probably very good advice, but obviously the complete opposite of the route I'm going with this blog. I mean, I've got links to more reputable sources, but this site is mostly full of my own yammering.

As publisher, author, and primary audience, though, I guess I get to decide that's okay.

How many people have food allergies?

2009-07-20T08:32:00.001-07:00

This is a question I'm curious about. The statistics that I often see cited are:

6% of American children have a food allergy;
4% of the general American population has a food allergy; and
The incidence of peanut allergy alone doubled in the five year time span between 1997 and 2002.
(Note, there are also many sources pointing out that the increase in peanut allergy does appear to be a "real" increase, not just an increase in diagnosis.)

Recently I had a conversation with my friend Susan about these numbers. I have no scientific basis for this belief, but we both thought based on our own experiences that the above numbers (well, at least the first two percentages I mentioned) might be a bit outdated. Anecdotally, I can think of lots of friends, or friends or friends, etc., whose kids have a food allergy. Seems like more than 6% to me.

Some possible explanations for this:
1) My own heightened awareness of food allergies is causing me to hear about these stories more?
2) There's something weird going on in my demographic health-wise that is causing our kids to have food allergies at a higher rate than the general population of American kids?
3) The 4% and 6% numbers are outdated and may really be higher?

Off the top of my head, here are the people I can think of in my own small circle of friends whose kids have at least one food allergy:
--Coworker/friend S.: daughter allergic to sesame, peanuts and tree nuts
--Coworker/friend G.: son suspected allergic to milk (he's quite young; not yet confirmed by testing)
--Joe's coworker J.: daughter has food allergies to nuts and maybe something else? (I'm not sure - I don't know her so well)
--Friend J.: son allergic to peanuts
--Joe's friend from high school A.: daughter allergic to peanuts and tree nuts
--Friend C.: son allergic to peanuts
--Cousin B.: son allergic to eggs and peanuts

I might have some of the specific foods wrong, but you get the idea. I don't think my mom could've named that many parents of food allergic children 33+ years ago when I was born, so something is up, for sure.

As an aside, each of the children noted above is a firstborn, and all of them are currently under the age of 4. So, it will be interesting to see whether they grow out of these allergies and whether any of their siblings have allergies.

EDITED TO ADD: Grrr. Typing this list and then looking at it made me think, how come Georgia has so many different allergies?! Most of these kids have 1 or 2, but we're currently sitting on 6. Ugh. It's not good when you're actually kind of jealous not just of the people without allergies, but the people with fewer allergies. I know she's not the only one in the multiple-allergy-sufferer boat, but I do hope her list gets shorter over time.

Food Allergies Suck

2009-07-18T12:14:00.000-07:00

What was I saying before about keeping a positive attitude?

Forget that for now. I am in a negative mood. Feeling like no one understands.

Sorry - it's my ~~party~~ blog, and today I'll cry if I want to.

A Couple of Good Books

2009-07-14T14:03:00.000-07:00

Recently I picked up two children's books for Georgia having to do with food allergies. She's certainly too young to be expected to manage her allergies by herself, (duh), seeing as how she's under 2 and can hardly even pronounce the word allergy, much less fully understand it. However, I do think that it's important to start taking baby steps towards getting her to understand and pay attention to her allergies. I mean, I hope that by age 3 or 4 she knows that she can't just eat everything put in front of her at a birthday party or handed to her by an adult or a friend.

So, I decided to order these two books from Amazon:

Allie the Allergic Elephant

Mommy, Is this Safe to Eat?

Each is designed for an audience slightly older than Georgia, but she enjoys them both, and I think she's taking something valuable away from them, albeit in tiny morsels of knowledge that may take months or years to really sink in. Let's put it this way, after just 1 reading of Allie the Allergic Elephant, Georgia was parroting back to me, "No thank you peanuts." Not a bad start!

The second book, Mommy, Is this Safe to Eat?, is filled with actual photographs of children rather than drawings, so it really captured her attention.

I was worried that these books might scare Georgia, what with the talk of hives, and swollen lips, coughing, and carrying medicines, but to my pleasant surprise, neither of these books freaked her out at all. They must've been focus-grouped on a bunch of small children, because the message is serious but not intended to be frightening. To the contrary, these books attempt to reinforce the message that a kid with a food allergy is just a regular kid.

I'd highly recommend either of these books. They'd be great even for children without food allergies who might need to better understand what a neighbor or classmate's food allergy really means.

I will have to keep my eye out for other age-appropriate books that are broader in scope, because these two books only address peanut and tree nut allergies, which unfortunately won't cut in our house. (In fact, I'm hoping that those topics become obsolete for us once Georgia's old enough to do a food challenge for nuts -- but that's a post for a different day!)

Becoming "That" Mom

2009-07-07T19:30:00.000-07:00

It's been fairly easy so far to keep a low profile with respect to Georgia's allergies and not come across as crazy overprotective parents. Sure, we've probably driven the nanny, our nanny-share partners (hi Crystal and Rob if you are reading this!), a couple of babysitters, and our own families crazy with our ever-changing rules and restrictions regarding Georgia's diet and what foods we will and will not allow in our house, but as for strangers? Other friends? We really haven't had to bring up Georgia's allergies too much or bother them with the issue.

Unfortunately, though, I think our ability to go low-pro is largely due to Georgia's age. As she gets older, we'll stop having such complete control over what she eats and where. From playdates to birthday parties to preschool, we'll have to start trusting a wider group of people that may feed her.

A couple of recent events have me thinking about this. One was an instance where Georgia was around a young child eating what I think was peanut butter, and I found myself feeling a little paralyzed watching it. (I think this kind of parental anxiety is the part of food allergies that it's hard for outsiders to comprehend. You think you can imagine putting yourself in someone else's shoes but you really kind of can't. Believe me, I grew up eating pb&j's all the time and never used to think of peanuts as if they're some kind of evil. It's an unsettling feeling to realize that silly peanut butter can make you go suddenly nervous.) But back to the point - I didn't say anything and didn't want to have to but was watching Georgia like a hawk. Maybe I should've said something? I don't know. The second instance was one where a kind person gave Georgia a cookie, which she is not supposed to eat because of the eggs in them. I hated to make this person feel weird or make a scene, so instead of saying anything I just deftly took the cookie away while no one was looking before Georgia ate any. I think this was the right thing to do under the circumstances. Not every moment has to be an opportunity for food allergy education and advocacy, right? I don't think I'm cut out for it -- at least not yet. At the same time, though, I know that as Georgia gets older I will need to get braver, clearer, and more up front about addressing her food allergies with others if I am to adequately care for my daughter or have any peace of mind when leaving her in others' care.

On that note, I am pasting in excerpted text from a blog entry I stumbled upon that I think pretty well sums up a lot of what I'm feeling. I don't know if I'll have to make safe snack lists someday, but I can certainly relate to this mom's concerns about sesame allergy. No sense reinventing the wheel if someone else has already said it best, right?

Don't Kill the Allergy Mom (from Scrambled CAKE, September 9, 2007)

"The Allergy Mom. You know her, the one who goes on about deadly foods (everything your child likes to eat) as she politely hands you a list of “safe” snacks (nothing he’ll go near). Once she’s out of earshot, the other parents huddle and express outrage. “But all my kid eats is peanut butter!” “What am I supposed to send for lunch?” “What nerve! Can her kid’s allergy be that serious?”

Yes, it can. Food allergies can kill. And sometimes they do. Sometimes at school. Be thankful you’re not an allergy mom.

When Smartypants was a toddler, I mixed up a nutritious batch of hummus for him. He loved my homemade blend of chickpeas, tahini (sesame paste) and garlic. I beamed as he gobbled my creation. Then he got tired, started rubbing his eyes and fussing. I figured he’d had a long day and he was telling me he was ready for bed. Wrong, he was telling me he was in distress.

When I wiped off the hummus that coated his fingers, arms, hands and face, I saw he was bright red. He had a rash on every inch of skin the hummus touched. Hives erupted before my eyes. Fortunately, my cousin had advised us to keep a bottle of Benadryl in the kitchen, so DH grabbed the nearby bottle while I phoned the pediatrician.

We gave our young son the medicine and sat watching him, studying the dynamic 3-D show on his skin, dutifully tracking his breathing, the ever-changing hives and his vital functions. And trying not to show how completely freaked out we were.

So, yes, I’m an Allergy Mom.

Thankfully, we were spared a trip to the ER, but that night we were introduced to a whole new set of parenting worries. Allergy testing indicated a potentially life-threatening reaction (anaphylaxis) to sesame."

"Even though sesame is not as ubiquitous as peanuts, it’s out there. Sesame seeds top bagels, loaves of bread and pretzels. It’s a common ingredient in Japanese, Chinese, Greek and Mediterranean foods (falafel, hummus, etc.). Those potentially deadly seeds lurk quietly in many snacks “party mixes” and containers of bread crumbs. Allergy Moms ask questions. We read labels. Always.

Now that Smartypants is older, he takes more responsibility for himself (I still give a heads-up to his teachers- I’ll get into more detail about this later in this food allergy series). But when he was in preschool, I was the Allergy Mom who handed out the “safe” snack list. A list compiled after a long night at the grocery store, examining the fine print and ingredients list on almost every product label in the snack/cracker aisle.

Most of the parents took care to stick with the list or call me if they wanted to bring an unapproved item. Some even insisted I read the product label myself before giving the green light. Their concern meant a lot to me. It’s scary enough sending your child out into the Big World. When that child has serious food allergies that maternal fear inches up a notch or five.

So please be patient; hold back your snarky comments and give the Allergy Mom a break. She’s depending on you to help keep her kid safe."

Debbie Downer? Think Positive.

2009-07-05T12:17:00.000-07:00

So often in life you can't really control the circumstances you face; all you can control is your own attitude in dealing with those circumstances. I am a believer in the power of positive thinking, but of course I don't always live up to the ideal.

After Georgia was diagnosed with food allergies, I picked up a copy of this magazine in Whole Foods:

I don't know why, but the name of this publication just cracks me up. It seems like kind of a downer way of looking at life with allergies. Maybe it was just this particular issue, though, with the somewhat drab looking photo of various breads. (I really don't mean to knock this thing overall, because I'm sure the magazine contains useful, informative stuff, and I have seen other issues with much more colorful, catchy cover photos. I'm all for any reading materials on the market that help allergy sufferers and non-allergic folks alike learn more about this stuff.) Anyway, I still think the name is funny.

Contrast that with this logo:

Enjoy Life is a brand of snacks and cookies specifically designed for people with food allergies. Kudos to whoever did their branding, because I find this name to be so much more positive. A refreshing reminder that living with food allergies doesn't mean you can't enjoy life to the fullest.

And just to crank up the cheese quotient of this post, here are a couple of parting quotations about optimism and the power of positive thinking (all of which were of course cut and pasted from websites that I don't know the reliability of, so apologies to the original authors if these have been butchered!):

If you don't get everything you want, think of the things you don't get that you don't want. ~Oscar Wilde

I don't think of all the misery but of the beauty that still remains. ~Anne Frank, The Diary of a Young Girl

The excursion is the same when you go looking for your sorrow as when you go looking for your joy. ~Eudora Welty

Don't grieve that your roses have thorns. Rejoice instead that your thorns have roses! ~(Not sure who...found this unattributed quotation on the web)

And the capper:

I wish I was a glow worm,
A glow worm's never glum.
'Cos how can you be grumpy
When the sun shines out your bum!
~Author Unknown

A very good thing (Cool beans!)

2009-07-01T08:59:00.000-07:00

Good news: Georgia can eat beans now! Like, pretty much all beans - green beans, pinto beans, white beans, black beans. Everything but chick peas which are still off limits until further testing is done.

The rest of the beans we were allowed to phase back in on our own and have done so with no problems. So, it appears that The Great Bean Scare of '08-'09 was a false alarm.

It's so wonderful to add these tasty and nutritious little buggers back to her diet.

It's so relieving to move an ordinary, every day object (food) out of the "potentially threatening to your child" category and back into the "normal/who cares?" category.

Georgia, a wonderful world of Mexican food has just been opened up to you. ¡Buen Provecho!

Stuff that Bugs Me (Installment #1)

2009-06-24T19:05:00.000-07:00

1. People that both accept the "hygiene hypothesis" as gospel truth while simultaneously not at all understanding it. I did not give my child food allergies by overusing hand sanitizer, and p.s., I'm not even close to being a germaphobe.

2. People who write inflammatory articles and blog posts making it sound like food allergies are the invention of parents who need to feel like their child is "special." I'm sure there is someone out there that actually fits that profile, but must you diminish everyone else's real concerns by focusing on the outliers? Trust me, no sane person wants their kid to be "special" in this way.

Just a venting post. I realize that both of the above complaints betray my own insecurities as a mom of a food allergic child. It is something that I have struggled with -- trying not to care so much what anyone may think of me as a mother when the subject comes up that Georgia is allergic to certain foods. It's just that food allergies have gotten more and more media attention in recent years, not all of it accurate, and certainly not all of it positive. So, as soon as the subject comes up (which frankly, I usually try to avoid unless necessary - I guess I'm not the best food allergy spokesperson at this point in time), I just assume that the person I'm talking to has a lot of preconceived notions and is judging me left and right. First of all, that may not even be the case, and I'm obviously guilty of prejudgment myself if that's what I'm thinking about this person for no apparent reason. Second, who cares? (That is the part I especially need to work on.) I can't blame myself for whatever caused Georgia to have food allergies, whether it be genetic or environmental, certainly it was nothing that I knew how to prevent otherwise I would have. I can't control whether this person somehow doubts that Georgia's food allergies are "real." On a related note, I need to get over my own embarrassment and shyness about asking questions in restaurants about exactly what is in the food. I know that my child's health may depend on the answer, so I'm ashamed that I have sometimes taken chances rather than risk bugging a waiter with a question that might be annoying. Working on all of this....

Initial impressions of the Children's Memorial Food Allergy Study

2009-06-15T22:27:00.000-07:00

Woops. I really had high hopes of coming home and recording our thoughts and impressions of our participation in the Children's Memorial Food Allergy Study on the same day that we did it so that everything would be fresh in our minds. Unfortunately, we were too busy that night, Georgia happened to get pretty sick the next day, and yada yada yada, here we are over 10 days later. Oh well, better late than never.

Believe it or not, this was our first ever trip to the local children's hospital since Georgia was born. (Knocking on wood as I type this....) The place seemed very nice, clean, and child-friendly, but of course there's something just sobering about setting foot in such a place and thinking of all of the immense joy, and hardship, and healing and suffering that is going on all around you. I wonder what it must be like to work there.

The folks running the food allergy study were EXTREMELY well organized. As soon as we told the ground floor information desk attendant that we were there for the food allergy study, she called upstairs to confirm that they were expecting us, and someone came down to meet us and escort us to the room where the tests would be conducted.

The setting was bigger than, and more stocked with all sorts of equipment than, a typical doctor's office, but it was not a regular hospital room, either. It did have a bed but did not feel super "hospital-y." We were surprised by the number of people involved in carrying out the whole appointment, but as I mentioned, they ran a tightly run ship and each seemed to serve a purpose.
In attendance in this room were:
--Georgia, Joe and me
--Deanna, who I guess you'd call the coordinator of the process - and the one asking all of the umpteen questionnaire questions of us
--2 nurses (or nurse practitioners? I'm nor sure of their titles) carrying out the height, weight, BMI, blood pressure, blood draw, and skin prick tests
--a student intern from Loyola, who in addition to observing gave Georgia a goody bag and tried to keep her happy
--another helper of some sort whose primary job was to tell Joe how to breathe during the lung capacity test

A few noteworthy things (and I'm compiling these from Joe's input and mine):

--Joe saw stars during the lung capacity test, which basically involves blowing really hard into a tube thing while this woman yells, "KEEP BREATHING! KEEP BREATHING! KEEP GOING! KEEP BREATHING! KEEP PUSHING!" at you the whole time to encourage you to reach your true max. Georgia didn't have to do this because she's too young; I didn't have to do it because I'm pregnant.

--Same is true for BMI -- only Joe had his tested (17%). Although, they did take my height and weight, and I made sure that they included a big "pregnant" annotation in their records!

--They had a tiny infant sized blood pressure cuff for Georgia. Joe had the lowest BP readings he's ever had. In his non-professional medical opinion, this was because he was holding Georgia at the time. "A natural sedative. It was like measuring the effect that holding a baby actually has on someone."

--The room had these small TV monitors that swung out on an arm, which they had tuned to cartoons in an attempt to keep Georgia happy and/or distracted. Great idea, but too loud. Also, they kinda spent their big ammo too early. I think they should've saved that distraction for the hard part (i.e., the blood draw), which was later during the appointment, rather than starting it during the simple blood pressure test, which was the first thing they did, and which Georgia didn't mind. The other funny thing about the TVs was that all of these nurse types totally knew all of the characters and songs and kept pushing the TV and getting all up in Georgia's face about it, like, "Oooooh! Super Pets!" (or whatever they're called), except that Georgia hadn't seen these shows before, so it was all lost on her. You'd think that due to not watching TV at home that she would've been enthralled, and I suppose she was for a few minutes, but really she doesn't seem to have "trained" her attention span for TV consumption yet, so it only worked for about 3 minutes at a time, if that.

--One of the biggest (and certainly most time consuming) parts of the session was orally answering a TON of questions. I expected this but the downside was that at times I felt like I was being pulled in two directions at once. Like, I'd be answering questions and have to stop and say, "Wait - I need to watch this," so as not to miss out on what they were doing to Joe and Georgia. The questions were of course about what Georgia eats and when she first started eating each food. But it was more than that -- lots of questions about all of our sleep habits, lots of very detailed questions about what I ate (and how often) while I was breastfeeding. I mean, really exact - like how many times per week did you have beans? how many times per week did you have orange vegetables? how many times per week did you have green vegetables? I tried my best to remember. Both Joe and I had to answer certain questions about ourselves, but for the Georgia or "family" questions I served as primary answerer. You know how it is with questionnaires when you can tell what they're trying to get at, but your literal answer doesn't quite fit? Well, that happened to us, and Joe and I sometimes found ourselves trying to answer the question behind the question - which of course was not what we had been asked to do. Like, for instance, when they asked us whether in the last 6 months your allergist had adequately explained our child's allergies, we were thinking, well, yes, the allergist is thorough and all, but no, we haven't had an appointment in over 6 months, so um....not sure??? That kind of thing.

--Skin prick tests were performed on Joe's forearm and on Georgia's back. With a single tool they pricked the skin in 8 spots at once. Joe says it felt like a bunch of tiny simultaneous pinches. Then they waited 15 minutes to test for any reaction and measured the "wheal" (aka, welt) size in any spot where a reaction occurred. Joe says the waiting period sort of felt like wearing a wool sweater in the heat - hot and scratchy. He only reacted to mold and dust mites. Georgia reacted to fish, wheat, egg, cat, peanut, sesame and walnut. (But keep in mind that a positive skin test doesn't necessarily mean an allergy -- we have never had trouble with feeding Georgia wheat or cats - har har.)

--The blood draw was the worst part. (Well, except for Joe's which went better than any he could remember. He said he didn't even feel it. Mine also went fine, and it did not hurt, but I do think that they screwed mine up a little bit because I ended up with a bruise for several days afterwards.) As for Georgia - they had to try two different times, once in each arm. She pretty much cried and screamed the whole time. Even when they just put that little rubber-band like tourniquet on her before inserting the needle. (Side note: we're talking maybe 2 tsp of blood here - nothing major.) The nurses looked nervous about dealing with her tiny veins and seemed to get easily flummoxed. I know that Georgia was more freaked out than she was in any real pain, but still, it's hard to watch your child go through that. Joe was more at peace than I was during Georgia's blood draw, I think because he was the one in charge of holding her in his lap, basically in a big bear hug to steady her arms. So, he knew that she was safe and snug. Rationally, so did I, but it was hard to just be standing there. Overall, though, I think we both hid our emotions, so I give us points for not being the type of parents that only further freak out their kid in a scary situation by looking freaked out themselves. Anyway, I would certainly recommend that other parents participate in the food allergy study and not get dissuaded by the prospect of the blood draw. That said, I was surprised that the woman who drew Georgia's blood was not a particularly "good stick" given that she works in a children's hospital. As she said herself, "the guys down in the lab could get blood from a rock." I don't know - maybe she was kind of new at it?

--Georgia actually asked to go home at one point, which was a first. I really think this had to do with her being a little bored and fed up with being in a small room for so long (about 2 and half hours, total) and not with actually being upset by the experience.

--I'm saving the best for last: We got free valet parking (on a day when it was pouring rain - woo-hoo!). We also got about $100 of Target gift certificates for participating! I knew that the study gave away gift cards to participants, (as a nod towards off-setting any travel expenses or inconvenience), but my understanding was that it would be a nominal amount, maybe $10 total. Well, maybe they're overstocked with donated gift cards or something, because I got home to realize that they had given us several more - and to a store where we'll actually use them!

Overall:
The study was well run and organized. Everyone involved behaved professionally and treated us and our daughter fantastically. It was a long morning, and a surprisingly tiring experience for all of us, but I would strongly encourage anyone else with a food allergic child to sign up and participate in this study. I have high hopes that the data they collect will one day lead to research breakthroughs, or maybe at least a clinical study.

Tomorrow is the day!

2009-06-01T21:31:00.001-07:00

Tomorrow morning begins our family's participation in a food allergy research study. And I'm excited! Just thought I should record this optimism in case it case it doesn't last. Full report after the fact - I hope I'm still feeling this positive about the experience when we're through.

In the meantime, here's a little blurb from the people conducting the study:

"WHY IS THIS STUDY BEING DONE?

We plan to study two groups of children under the age of 21: one group with food allergy (case) and another without food allergy (control). We also plan to study families who may have at least one child with a food allergy. The purpose of the study is to look at the information from both case and control children and families to better understand how environment (where and how you live) and genetics (things you inherit from your family at birth) affect food allergy and related conditions."

And here's my own little blurb:

WHY ARE WE SUBJECTING OURSELVES TO THIS STUDY?

For Georgia. And for others with food allergies. And for other people who might not ever have to experience a food allergy in the first place if the researchers can figure out more about prevention and cure. But I'll be honest - it's pretty much all about Georgia. Basically, food allergy is an area that needs more research, and I hope our family can directly benefit from that research, so I figured that the least we could do is volunteer to participate in a study that essentially subjects us and our daughter to nothing more than what they'd subject her to at her regular allergist appointments anyway.

"Being Treated as Allergic" vs. "Allergic" (and also: why I'm not convinced Georgia's allergic to eggs)

2009-05-19T21:05:00.000-07:00

Okay, this is a subject that is still confusing to me.

Medical testing for food allergies is notoriously inaccurate in that it gives a lot of false positives. So, if someone gets a positive skin or blood test, how do you know if it's an indicator of a true allergy or just a false positive? Well, you rely on whether the person has had a reaction to actually ingesting that food. If so, then you can feel confident that the positive test result is accurate. If not, then there's a very good chance that it was a false positive.

Fine, but what about if the person hasn't ever even tried the food in question? Seems you might just feed it to them to find out if they're allergic, but it's not that simple because that can be quite risky. My understanding is that they (the doctors) look at a couple of factors: (a) the age of the patient, and (b) the numeric result of the RAST (blood) test.

Age of Patient: I could have this wrong, but I think that in some cases, based on the age of the patient alone, the doctors will not proceed with a food challenge or suggest that the child eat the food, because it is safer to just wait and have the patient re-tested in a year. Whether a food challenge may be in order is something that gets considered when the child is a little bit older.

Numeric Result of the RAST test: For whatever reason, each food has a different scale on the RAST test - (this is what I've been told, anyway). So, maybe egg ranges from 0 to 10, but peanut ranges from 0 to 15, and apple ranges from 0 to 12, or something like that. (I am making these numbers up, they may be more like 0-100, but that's not important.) The score on the RAST test is not considered to be an indicator of the severity of the allergy. You could score a 1 for peanut, and so long as it's a true positive and not a false positive, you may have the same allergic reaction to peanuts as someone scoring a 15 on the peanut scale. However, the score on the RAST test is believed to correlate with the degree of reliability of a positive result. So, for instance, if someone scores a 14 on the peanut scale, maybe that means the doctor is 95% certain that that's a true positive rather than a false positive, whereas if someone scores an 8 on the peanut scale the doctor may feel that there's only a 70% chance that that's a true positive. (Again - I am making up the numbers here just to get down the general concept.)

What a mess, right? Because in the end, even though the degree of certainty from the test results varies depending on the person's score, the person who scored an 8 (or a 1 or whatever for that matter) might very well actually be allergic to the food in question.

So, bringing this all back to Georgia....
In her case, she scored just barely high enough on the RAST test for eggs that the doctor did not feel comfortable letting us do a food challenge for eggs. In other words, her numeric score gave the doctor just enough certainty that the positive result was a true positive that she doesn't want to chance a bad reaction by feeding Georgia any eggs. So, we have been instructed to eliminate all eggs from Georgia's diet and are following the doctor's orders on this.

I have my doubts that Georgia is actually allergic to eggs. Maybe that is wrong of me to say, but I am just being honest. I say this because of 3 things: (a) prior to allergy testing, she had previously eaten cooked egg yolks without any observable reaction [granted, it is the protein in the egg whites, not the yolks, that people are allergic to, but given that we had separated these eggs by hand prior to cooking the yolks for her, I somehow doubt we actually removed every single egg white particle perfectly in the process of separating, so she probably ate some, right?], (b) she had birthday cake when she turned 1 without any observable reaction [although, admittedly, there are studies out there showing that some people with egg allergy can tolerate eggs cooked at very high temperatures - like in baked goods], and (c) the fact that her RAST blood test result for egg was just barely high enough for us to miss the cutoff point at which the doctor would've considered her eligible for a food challenge for eggs. So, I could be wrong, obviously, but I'm just being honest and saying that in my heart of hearts I do not think that Georgia is actually allergic to eggs. My hope is that when we go back in the fall of '09 for additional testing that Georgia will test even lower on the RAST test for eggs and will be cleared for a food challenge, and that my doubts of her egg allergy will be proven correct, (or, if she is actually allergic to eggs now that she will have outgrown the allergy). All of this said, we are not idiots and are therefore following the doctor's orders to a T. We do not feed her any eggs. We describe her to others as allergic to eggs and expect them to treat her accordingly - because the doctor has told us that she is - simple as that.

Anyway....getting back to the whole testing thing....
Georgia was not tested for poppy seed allergy when we had her tested for allergies in the fall of '08 (good Lord, why would she be? poppy seeds, for cryin' out loud?!), but several months later she later had a reaction to poppy seeds, so I had to call the allergist about that. During this phone call I asked a few more questions about the testing and got some clarification. My question was basically: "Is Georgia allergic to peanuts? Because I know she tested positive for those, but she has never eaten them, so how do we know?" (i.e., how do we know that these weren't false positive results?)

Answer (paraphrasing here, obviously): She scored an 8.19 on the RAST test for peanuts. At this level, judging only from the RAST results, (since she hasn't eaten any peanuts yet (except via breastmilk) or had any known reaction to peanuts), it is "probable but not certain" that she is allergic to peanuts. Her RAST score does not put her into a category where we could say with above 95% certainty that she is allergic to peanuts. But based on the probability that she is allergic, we are advising you to delay introduction of peanuts to her diet. If, one day, she is able to score below a 5 on the RAST test for peanuts, and she is at that point over 3 years of age, then we will probably do a food challenge for peanuts to find out for sure. Until those criteria have been met, it would be too risky to do a food challenge. (Peanuts being notorious for causing the most severe of reactions, like anaphylaxis, in those who are allergic.)

So, to sum up: since Georgia has never eaten a peanut (except via breastmilk) or had a known reaction to eating a peanut, the allergist might technically say that Georgia is "being treated as allergic" to peanuts rather than saying that she is certain that Georgia "is allergic" to peanuts. But from a practical standpoint, this is a distinction with no meaning. Either way, the point is that she can't eat anything with peanuts. So everyone, including the allergist, would/should just call her "allergic to peanuts" for simplicity's sake until it's been proven otherwise, (which unfortunately, it sounds like we can't even hope for happening until she's at least 3 years old).

EDITED 8/12/09 TO ADD: Since writing this post, I've learned a little bit more about the RAST testing, and I don't think I explained it quite right here. My understanding is that the scale is the same for each food, it's just that for each food there is a different point at which the doctors will say with 95% certainty that you are allergic to that food. So, for instance, a score of 4.5 for shellfish and a score of 4.5 for peanuts may not mean the same thing as far as the chances that each result is a "true" positive. This post from 8/8/09 explains it a little better, I think.

How severe are her food allergies?

2009-05-11T20:34:00.000-07:00

This is a common question.
We have no way of knowing. Despite what you may have heard, there is no test for the severity of a food allergy. All tests are binary – yes/no, black/white, off/on. And unfortunately, a person’s past reactions are not necessarily a good predictor of what future reactions will be. (As a parent, that is one of the most frightening aspects of food allergies to me. You can’t rest assured that hives today mean hives tomorrow. I have read horrifying accounts of people with only 1 mild reaction at age five, followed by an anaphylactic reaction at age 30 resulting in death. GOOD GOD, I CANNOT HANDLE READING THAT STUFF!) So, when you hear someone saying that their child has a “severe” food allergy, this probably means, (a) the kid clearly does, because he has experienced a truly severe reaction in the past, or (b) the parent just needs you to understand that any allergy can become “severe” without warning and therefore needs to be treated as such. All of that said, I think we can all think of people we’ve known who say things like, “my mouth itches when I eat strawberries.” They try to avoid the problem food but go through life occasionally eating it without major incident. So, in my mind, I think there must be such a thing as a “mild” allergy, it’s just hard (if not impossible) to know if it will stay that way. On the topic of severity, the brain (or my brain, anyway) can easily be fooled by the numeric results of the blood and skin tests. It’s very tempting to assume a higher number means a stronger severity, when in fact the test only measures whether or not a person is allergic. The higher the number, the greater the doctor’s certainty that a positive result is accurate and not a false positive, but that’s it – it’s not an indication of severity.

All of that said, we have been lucky so far - no anaphylaxis here. All of Georgia's reactions have amounted to hives, immediate itchiness on her hands and face and in her mouth, and in some cases, the sudden onset of coughing, which of course has been the scariest symptom, simply because it involves her breathing and makes us nervous about whether the reaction is going to escalate or subside.

Green pea food challenge - (and some info about food allergy testing)

2009-05-04T22:14:00.000-07:00

I apologize if I mess up the medical terms here.

Battle Green Pea: Georgia 1, Peas 0
Rematch: Georgia 0, Peas 1
Declared winner: Georgia!

Food allergy testing is comprised of several components: blood testing, skin testing, the patient’s history of reactions to a particular food, and, when appropriate, supervised food challenges in a doctor’s office. Basically, a lot of research remains to be done in the field of food allergies; therefore, the blood and skin tests are unreliable at best, and the only failsafe way to determine food allergy is to look at past reactions or have the patient ingest the food and see what happens. However, it can obviously be very dangerous to perform “experimental” ingestion in allergic patients, so doctors use their best judgment to determine when a patient should be considered eligible to do a supervised food challenge.

“Food challenge”? Our first was in November, for green peas. (Does this not sound like an episode of Iron Chef?) The appointment was around 8 a.m., and we were instructed not to feed Georgia anything after dinner the night before. DO YOU HAVE ANY IDEA HOW HARD THAT PART WAS? That was the real food challenge in my opinion, not the actual testing at the doctor’s office. This is a kid who wakes up saying, “Eat! Eat!” and has no comprehension of the word “later.” Anyway, we go, they continually monitor her vitals and start feeding her portions of pureed baby food peas in half hour, and then 15 minute intervals, in ever increasing quantities. (Again, please sympathize with the difficulty of giving a 15 month-old who thinks she’s starving only one bite of food and then telling her to wait.) Total time spent completing this food challenge: 4 hours. Georgia charmed the nurses and staff, behaved really well (considering her hunger, and the fact that we had to keep her entertained in a tiny examining room for 4 hours), and passed with flying colors. Yea! We were cleared to add peas back to her diet starting 24 hours later.

Fast forward to dinner the next night. I put peas and carrots on the menu, and what do you know? She breaks out all over her face! What? This can’t be carrots, can it? She’s never had a problem with them before. But how can it be the peas? Did we not just spend half a day getting cleared to eat peas?!

Conclusion: We spoke further with the allergist about this, and peas are back in Georgia's diet. It was the peas and not the carrots, but it was not an “allergic” reaction. Georgia's extremely sensitive skin is just irritated by contact with peas, so she can eat them so long as she doesn’t get them on her. In her case, they are an irritant, not an allergen. Or, in medical-speak, she was not having an “immune mediated” response.
Fantastic – we’ll take it!

And, for anyone who thinks I’m making this stuff up, here are a couple of pictures. (Sorry the quality is poor, but you’ll get the idea.)

Just before getting peas on her face:

Same meal, after having peas on her face for about 2 minutes:

Which foods are off limits as of today

2009-05-03T19:57:00.000-07:00

Short version of the current state of affairs (approx. Nov. '08 through May '09): Our daughter is being treated as allergic to peanuts, tree nuts, certain beans, sesame, eggs, and poppy seeds, and the doctor has us avoiding fish and shellfish until further testing is performed. She can’t eat these foods in any quantity, and we must keep Benadryl and an EpiPen on hand at all times in case of accidental ingestion resulting in an allergic reaction. Peas, black beans, and white (great northern) beans have been successfully added back into her diet. She’s happy, healthy, and eats tons of other foods. On a (possibly?) related topic - her eczema never completely goes away but it’s about 95% better than a year ago.

The blog name

2009-04-14T18:44:00.000-07:00

I had to pick a blog name. One that wasn't already taken on blogger. Something that at least remotely had to do with food allergies.

The "Goldilocks principle" refers to the need, when dealing with food allergies, to "maintain a balance that is just right between protective and debilitating anxiety." So says Deena Mandell in her study, Families Coping with a Diagnosis of Anaphylaxis in a Child.

The Goldilocks principle really rings true to me. I've read newspaper articles, other blogs, etc., and in so doing I often remind myself of how lucky our family is -- that of all diseases, afflictions, or accidents that can befall a child, a diagnosis of a food allergy really is not all that bad. All you have to do is simply not eat the offending food, and there aren't even any symptoms! And then I go and stumble across another article talking about someone, age 13 or 30 or whatever the case may be, who died from an anaphylactic reaction having maybe only suffered one mild case of hives from his or her food allergy before. WHAT THE? That is scary stuff. As a mom, it really messes with your head!

So, I'm trying to keep it all in check. Not too little caution. Not too much paranoia. Finding the balance that's just right - at least for our family.

Hi.

2009-04-07T20:57:00.001-07:00

As a parent of a child with food allergies, I go through phases where I think about, read about, talk about, and worry about food allergies a lot – sometimes too much. And then there are periods where food allergies hardly enter my consciousness as I go about the business of my day to day life. Really, who has the time?

Friends and relatives occasionally ask for updates on our daughter's food allergies. Again, I feel like I sometimes get it all wrong -- either failing to pass on useful information and legitimate updates when they might actually be warranted, or blathering on so much that the person is sorry that they ever asked.

Hence, the creation of this blog. It's kind of a like a diary for me. It's also a place where I can share updates and educational information for anyone who's interested that can easily be ignored by anyone who's not.