Fluarix Vaccine

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

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

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)

Finally! An appointment!

January 12th.

Bring on the eggs.

My bets are on Georgia.

Waiting...

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

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

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.

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

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...

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!

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.

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

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?

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)!

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

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

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...

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

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...

...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

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

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?

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

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

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

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.

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!)

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)

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

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!

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)

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.