Thursday, September 6, 2012

Have You Met My Friend: Constant Agitation?

This morning was a pretty typical morning in our household: the kids 20 minutes behind and me sucked into the Siren's call of Facebook when I should be packing lunches. So, the last 5 minutes was a flurry of my son and I both shoving things into a bag.

I grab a dark chocolate Kit Kat (thank you, Peanut Free Planet and Nestle) and shove it in. A moment later, he yanks it back out and mumbles something. I hear "mmrmmmrmmrBLEmme itchy mmrmmr."

"What?" My hand stills as I'm shoving "may contain milk" pretzel crisps into another bag.

"I said that you need to stop packing those in my lunch. They make me itchy. Same with the Junior Mints. There's too much soy in them."

I'm holding the pretzels he's asked for, thinking, what about these? New item we've been trying, have packed it in his lunch before... I go for lecture mode in self-defense.

"You do remember these are 'may contain', right?" I ask.

"Yeah, I remember," he says. What does that mean? Have they been making him itchy too?

"You know you have to be careful with this stuff, because you can get a much bigger dose of milk if they come off the line right after they switch over flavors..."

"I KNOW, Mom," he says, and he's out the door, obviously done with the conversation. I'm left with a very bad taste in my mouth.

Over the last year, we've been playing milk roulette. When my son passed the baked milk challenge a year ago, his doctor told us she thought he could probably tolerate "may contain" foods and that we could start introducing them.

About three years back, we had another formative experience: my son had a reaction to soy. I had done the shopping (always a problem - my husband is the one who has the best handle on brands) and bought an "ice cream" brand that was available in both coconut and soy options, unbeknownst to me. My son ate an entire bowl of the soy stuff before he started to react. The reaction involved wheezing and we did end up in the hospital, but the doctor concluded that his threshold was very high for soy and that we could probably start introducing foods where the soy was listed as one of the last ingredients. Frankly, remembering his childhood reactions to soy, we haven't had the courage to do much of this...other than Junior Mints, with their "soy albumin" as the last ingredient.

At the moment in the kitchen when I stopped like a rabbit, ears up, listening after the itchy, I realized how fragile was my house of cards. What was I doing? How did I get from "try a little" to putting both "may contain" pretzels and dessert in the same lunch? At school! And how long had my kid not been reporting his symptoms?

I want these allergies over. I want them over so much that I can taste it. And now, sitting in the house with the silence all around me, I have to acknowledge that I may have been willfully ignoring those small clues, like my son only eating one stick of the Kit Kat at a time despite loving them.

And yet...there's no way through but through. He almost always had oral symptoms during baked milk dosing, which the doctor told us to push through. Is the itchy mouth from raw milk or micro amounts of soy in the same category?

It's too late. All it took was one comment to pull the whole mental card house down. Who knowingly sends something in their kid's lunch that could kill him?

But what if this is the only way for him to outgrow? What if NOT doing this will result in him going away to college with a threshold that's less than it would have been if we kept pushing through?

Is the FAHF-2 just not working? Oh God - is it placebo after all these pills and months? Or do the oral symptoms simply not matter because the changes are in the gut, not in the mast cells in the mouth? Have I  and his doctor  been mistaking slow-building reactions for tolerance?

Does anyone know anything? 

I don't.

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  1. "But what if this is the only way for him to outgrow? What if NOT doing this will result in him going away to college with a threshold that's less than it would have been if we kept pushing through?"

    My thoughts EXACTLY each and every time I feed him a milk-laced cupcake, which he is finally accepting. Which may be the cause of his recently-diagnosed EoE. Scope in 3 weeks to figure it out - if his EoE is unresolved then we may have to stop the baked milk. Only 5 years until university ... I just want him to be able to enjoy shoving a piece of pizza into his mouth at midnight while having a blast at a party with his friends just like his Mom did! As usual, you seem to put my thoughts into this blog - so I don't have to write one myself!

  2. "I want these allergies over." Yup. Similarly, my multi-allergic daughter has tolerated gluten-free oats for years, but she doesn't really enjoy eating them as breakfast and I am forcing her to eat them in an effort to eliminate the crappy excessively sugared breakfasts that she prefers. The other day she wouldn't finish her oats and said they made her tongue itchy. My reaction? I'm a little embarrassed to admit this . . . I was really annoyed and felt certain it was a ruse. It is such a struggle to feed this child between her multiple allergies and her extreme pickiness and her willingness to create drama over breakfasts, and my gut feeling was that she just doesn't want me to make oatmeal anymore and she knew "itchy tongue" would get my attention. That's what I was thinking and feeling in the moment. And, about an hour after dropping her at school and still feeling bristly over the oats incident, the fears started to creep in . . . what if she is reacting right now, but no one realizes it (because she has slow moving reactions). What if I killed her with that itchy oatmeal? She was fine, of course, and after thinking about it more I went through a list of the other things I'd added to the oatmeal and decided the next bowl would only contain "absolutely 100% safe without a doubt" stuff: that way, if she complained about the oats itching again I would at least know it was the oats and not the jam (what if it's cross contaminated) or the chia seeds (these are new, and seeds have been problematic in the past). Heaven forbid I might have even made a mistake and used the non-GF oats, even. You never know, the oats may have really been itchy. Anyhow, I have continued to feed her oats (minus the seeds) and she has continued to refuse to eat them. This morning she asked for an apple with sunbutter instead and I relented. I need to follow up and find out if the other batches of oatmeal were itchy. No moral to the story in this comment, just me griping . . .

  3. Just need to add that "there's no way through but through" will probably become my mantra.


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