Sunday, March 24, 2013

The Not-Much-To-Update Update

I've waited to update you guys on my son's progress until I had some progress to report. I seem to be very unorganized and scatter-brained these days. True story: I called the allergist's office to get my son's RAST report.

ME: "Hi, I"m calling to see if you have my son's RAST test results back. It's been a couple of weeks since we were in."

NURSE: "Sure, let me check. Which lab did the blood draw?"

ME: "Um...what?"

NURSE: "We don't do blood draws here. Remember -- we gave you a lab order -- "

(She has to stop at this point because I've started laughing uncontrollably.)

NURSE: "Heidi? Is that you pimping me again? HEIDI?"

ME: "No, no, I'm sorry, I really am a parent. I just started laughing because I realized we never had the blood drawn. I'm so sorry!"

NURSE (long pause): "Um...o.k....I just thought it had to be the girl at the front desk again, teasing me. I mean, who calls for lab results when they haven't even - " (stops, as she realizes there's no way she can finish this sentence without letting me know what a complete IDIOT she thinks I am.)

ME: "Well, thanks! I'll obviously call back after we do the blood draw."

So that's how it's been going. My son did see his allergist and they did do SPT:

7/30 (about as bad as last time)

So...good and bad here. He's never had a completely non-reactive soy test. If the RAST comes back as promising, we'll probably do a soy challenge in the office in a month or two.

Hazelnut was an interesting conversation. The doctor agreed with my assessment that this is probably a pollen cross-reaction. She suggested an IOFC, rather than bothering with component testing, if the RAST is at a reasonable level.

Peanut was a shocker. If you remember, we actually had difficulty qualifying for the FAHF-2 food challenge because my son's RAST and SPT were borderline low for what they would accept. His peanut went from 3.5 during the challenge to a rather large 9 this time around. His allergist shrugged and said "well, you fed him peanut. That makes the numbers go up."

So does that mean he's more sensitized to peanut because the number went up? Honestly -- the more we've done RAST testing over the years, the more useless it's seemed to me. His RAST and SPT for green pea were (and still are) negative, and yet he failed that challenge, so clearly testing isn't everything.

Since the end of the clinical trial, we've introduced a ton of foods with "may contain" labels for both peanut and milk. (His allergist does concur with the advice from the clinical trial to start introducing these foods.) He's had absolutely no problem with any of it. For several weeks after the trial, we were also trying to work in daily baked milk. Again, he had no trouble with any amount we gave him, as long as it was straight milk or butter. However, over the last few weeks, we've all lost our mojo. I've recently started an in-office job (I've been freelancing from home the last year), so there's not a lot of time for baking and there's a very small window between a parent being home and it being too late in the evening to deal with the ER, should we need to do that.

I've actually toyed with the idea of sending his baked milk dose in his lunch. Our in-school nurse is very good and very interested in his clinical trial. I have a feeling she would be willing to be on-call if we wanted to risk doing this on her watch. But that seems a little far to go, even to speed up this process.

The bottom line is that I have a HUGE amount of empathy for the kids and parents in these OIT trials, where a daily dose is absolutely mandatory. My son missed at least two doses of FAHF-2 over the course of the trial. It was extraordinarily difficult to ensure every single dose was taken. (Granted: it was 3 doses a day, but even 1 dose every day is difficult.) If his desensitization had depended on my/his perfect compliance, we would have been in big trouble.

I also found that this new tolerance (and the potential to introduce soy in the near future) is causing issues I hadn't anticipated. A few days ago, we spent the day at one of the final two college possibilities. I spent about half an hour with food service trying to explain where he's at.

"So...if things go well, he may come to school with a lot fewer restrictions." The guy just looked at me and blinked. Clearly, they just want to know what to feed him and what not to feed him. This whole "maybe, sort-of, a little" business made both of us uneasy. How will he do baked milk at school, unless he's able to start eating it in everything?

I feel like we waited so long to try some of these things, and now we're out of time. I can quit my job again and dedicate myself to getting him as far as he's going to go with all this stuff. Or, I can work to pay for college. I apparently can't do both.

My son doesn't seem to have much interest in experimenting with milk-containing foods. He's definitely not an equal partner yet in pushing for new foods/higher tolerance. I think he just doesn't see his restrictions as that big a deal.

Who really needs to let go here?

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  1. Hi FAB,

    I understand what it's like to have a job and try to remember the baked in milk routine. I have been doing baked in milk for a while now (maybe 4 years), starting with about 1/4 tsp in a whole batch of cookies and up to about 1/2 cup milk in a batch of 2 loaves of bread. I have not been very consistent at all and I'm just now getting my allergist approval for this so you can yell at me if you want to but it gives me a sense that I am doing something instead of just waiting all the time for "the cure". All I know is that his Rast has come from about 80 to around 9 in about the last 5 years. Maybe it would have done that anyway but I like to think the baked milk is helping. When I spoke to my allergist about it, he said they hardly ever see issues with baked milk even though casein is "heat tolerant". I guess my point is that I would send the baked milk to school with him, even if it's just a small amount especially since he tolerates it at home so well. Does he take claritin or some other non-allergy medicine every day? I know that won't stop an ana rx but may ease other minor symptoms.

  2. I definitely will not yell at you! I think doctors are way behind on this stuff -- you are just ahead of the curve in understanding most kids can tolerate baked milk and that it helps kids to outgrow. I think most people are most comfortable starting this in the doctor's office and I think that's the better way to go (if only for peace of mind), but if you've demonstrated your child can tolerate it, more power to you!

    Let me know if you want me to dig you up the research link that shows kids are 16x more likely to outgrow milk allergy with the introduction of baked milk.

    My son, however, has not always tolerated baked milk and still does not tolerate it at all times. We are still trying to find a workable dose that's pushing the envelope but still safe. Until that point, I'm not comfortable sending it to school. We have had to treat allergic reactions a couple of times already. (These reactions have happened despite his daily antihistamine.)

    However, we had a very good Spring Break. Pound cake - a first! Such a joy to see him eat things like this. :)

  3. Great news on the pound cake! I understand the comfort zone not extending to school if he has had some reactions to the baked milk. Thank you for sharing your wisdom and speaking the truth - I'm so glad I found this blog. Your posts really hit home with what I have gone through and what I have found on the internet. I'm also holding out hope for fahf-2 and will continue to check back for new updates.


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