Friday, March 7, 2014

Life After Food Allergies

OK, so that post title is a little hyperbolic. My kid is still allergic to peanuts, and possible hazelnuts, lentils and some varieties of beans. (Doing a home black bean challenge today.) But really, I've felt over the last week like a HUGE burden has been lifted.

I think my son feels relieved as well, but what I've mostly been noticing is the anger. He's a really easy-going, loving kid so when he says things like "I'll try not to die" when I ask how things have been going, it's obvious that he's dealing with some simmering resentment toward my overprotectiveness and probably toward his allergies in general.

When we were at the food challenge last week, I did float the question out there to his allergist: If his numbers are still high, yet he passed, is it possible he outgrew this allergy years ago? It was a very impolitic question and she squirmed a little before answering that everything has its time and we should just be grateful. But I know it's what you all want to know: was this kid truly allergic to all these foods and the FAHF-2 really helped? Or were his parents and doctors just really overprotective and doing food challenges that should have been done years ago?

I don't know.

What both our regular doctor and the doctors at Children's Memorial told us is that RAST numbers do matter for most kids. Our kid just appears to be the exception. His RAST for peanut going into the study was <1, just barely over the qualification threshold. Since the trial, it's spiked back up to something like 10 (having trouble finding those results but will post the actual number if I find it).

Regarding milk: his last reaction requiring a hospital trip was around age eight. My husband and I have been racking our brains this week, trying to remember other reactions to milk after that point. While there were many mild mystery reactions over those years, neither of us remembers anything serious that could be definitively attributed to milk. Thanks to my husband's amazing record-keeping, I do know his RAST results over the years for whole milk:

2003: 11.3 (class 3) - level year of last known anaphylactic reaction
2007: 7.62 (class 3)
2012: 5.71 (class 3)

Yes, those numbers are low compared to some kids. Yes, the numbers have dropped over the years. However, he's never been lower than Class 3 for milk and has had anaphylactic reactions. Where was the magic perfect testing point? As I've noted in another blog post, the Mt. Sinai recommendations are very aggressive, indicating that even children with known severe reactions should be evaluated for tolerance every 24 months. you, we were in the position of second guessing our doctors. To be fair, the research about adding baked milk to the diet to speed tolerance is new information, but should we have pushed harder for these challenges?

My son's last known soy hospital trip was 2010. Here are the soy numbers:

2003: 12.0 (class 3)
2007: 2.81 (class 2)
2010: anaphylactic reaction
2012: 1.18 (class 2)

Where was the magic moment for soy?

His last RAST in 2012 for black bean was 3.02, class 2. We are doing that one at home today.

During the Children's Memorial screening for the clinical trial, they ran hazelnut to see if they could use that if he passed the challenge for peanut. That number was ~12. The doctor wants to do a food challenge this summer for it and has every confidence he will pass. Apparently she agrees with us that numbers have stopped mattering much for this kid.

This post has become all about the numbers and that's fine...I know that's what a lot of you are interested in knowing. I would have wanted the same thing in your shoes. I would have scoffed at reports of a food allergy cure and assumed the parents just weren't aggressive enough about the diagnosis or resolution of the food allergy involved.

There is clearly more going on with resolution of an allergy than a drop in test numbers. Unfortunately, that's probably the only thing that's clear. Some have pointed to a rise in IgG4 as a more telling diagnostic criteria, or decreased basophils. Perhaps total IgE has to be taken in consideration when evaluating the likelihood of passing a challenge. We were not privy to the results from the clinical trial so I can't share those numbers, but perhaps they will be published at some point.

While we were doing the milk challenge, we talked quite a bit about the clinical trial. I expressed my frustration to my doctor about the delay in any results. Her response was not reassuring: "Often when there's a delay, it means they got mixed results. They may not publish at all." It may be that this medication will not work for everyone. It could even be that it doesn't work well for anyone, and that my son's experience was unrelated to the medication.

I'll write more later on how things are going (he's doing great and eating everything with no problem). But until then, here's an appropriate song:

Addendum: my husband did dig out and send me the clinical trial results. For those of you who have asked, here are the really technical numbers (which, frankly, I don't understand completely so I can't explain):

Basophils: 0.050
Eosinophils: 7
Total IgE: 851 (a significant drop from the last study)
Total IgG: 962

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