Monday, March 16, 2009

Food desensitization studies and multiple food allergies

Today the LA Times featured an interesting story on food allergy research; you can read it here: http://www.latimes.com/news/nationworld/nation/la-sci-peanut16-2009mar16,0,3911635.story .

Many, if not most, parents of severely food allergic children are aware of and have been following the study described in this article for some time. The results are encouraging, but some parents have expressed (understandable) skepticism at both the method used in the study (feeding your child tiny amounts of a food that might hurt her) and the projected outcome (do we really know the long-term effects of this? Wouldn't it be better to wait to see if the child naturally outgrows it?).

Those of you who have been reading my posts for a while know that, several months ago, I investigated a treatment option like this that's offered in my city, but ultimately decided not to do it after our allergist advised that it was too early for anyone to be providing this therapy in a clinical (as opposed to research) setting.

I had another hang-up with this treatment ... even if it works as it should, it is still not a quick and easy cure for those like Ainsley who have multiple food allergies. There are research trials like this going on for other foods besides peanuts - including milk and eggs, two of the other foods to which Ainsley is allergic. Aside from those foods, she's also severely allergic to most tree nuts (she is more minorly allergic to sesame and coconut, so we'll leave those aside for the moment).

If we decided to participate in a food desensitization program, she would have to go through it for each allergen ... one at a time. For each allergen, the program would require a hefty time commitment for the first six months (8 hours in the doctor's office on the first day, then 3 hours a week in the office for the next six months or so, and also the time it takes to administer the "maintenance doses" at home 3 times a day on the days you're not in the office). Each program would also cost a lot of money and insurance would not cover all of the charges.

So, as great as this food allergy research is, there are many cons when it comes to applying it to a kid like mine. Ainsley is not only allergic to peanuts, eggs, and milk, but also to about 10 different kinds of tree nuts. I really just can't picture us going through a lengthy and expensive food desensitization protocol for all of those allergens. Don't get me wrong - eliminating even one of them would be great. But since it wouldn't really be able to eliminate all of her food allergies (particularly to the tree nuts), this form of treatment would not give her a life in which we will be able to forego reading ingredient lists and approaching restaurant and banquet foods - particularly desserts - with caution. For that, we will have to keep hoping that she will naturally outgrow all of her allergies and/or that a better option will become available in the next several years.

A final note about the LA Times article ... it states:

"According to reports at the allergy meeting, the stress of managing a child's peanut allergy weighs most heavily upon mothers, imposes a heavy financial burden on families and limits family vacations.

Among the findings: 68% of families with a food-allergic child limit where they will go on vacation, with most refusing to travel outside the U.S.... Compared with the general population, those who care for children with food allergies were more likely to stop working, reduce work hours and incur financial problems."

I can certainly attest that "the stress of managing a child's [food] allergy weighs most heavily upon mothers." With all due respect to her dad (love you, Dave), I wonder about all the things that would fall through the cracks with regard to Ainsley's food allergy management if I weren't around. Sometimes it feels like I am constantly communicating with her teachers about safe foods for school projects or parties, talking with our family members and close friends about what foods are safe for her to eat at their houses, or checking Epi-Pens and Benadryl to make sure the have not expired and are with her whereever she is. I am also so very thankful that we can afford for me to work part-time so that I can have time to do all of these things. Even if it hadn't been in my plan to reduce my work hours, I think Ainsley's condition would have forced me to do so.

Also, on the vacation front, I am glad to know I'm not the only food-allergy parent who doesn't consider a vacation outside of the U.S. to be a realistic possibility for us. Dave and I have talked about it and it just seems next to impossible because we would not be able to figure out what Ainsley could eat that was safe (especially since most other countries don't have the same food allergy labeling laws). As it is, even our domestic vacations require a lot of pre-planning and coordination.

One of the saddest things about her food allergies is that I am afraid it will keep her from exploring the world. Everytime I have one of those thoughts, I make myself take a step back and repeat the mantra I have used ever since we first discovered her food allergies - "One day at a time." Don't worry about whether she'll be able to go away to college and eat in a college dormitory, or about whether I might have to make her wedding cake myself. Just take things as they come and don't try to predict the future.

Thankfully, at this stage of the game, Ainsley doesn't want to go to Paris; she wants to go to Disneyworld, and that's a trip food allergies won't stop us from taking.

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