Tuesday, January 8, 2013

Waiting in the Wings for the Show to Begin

So almost three months has gone by since my son's last FAHF-2 trial food challenges. We are scheduled to do the last set of them in a few days.

What has really changed, I've asked myself repeatedly. Was it worth it? 

My son has been pretty angry the last couple of days. He had a bit of a meltdown last night and told me that my presence at the challenges was making his life hell. I realize that I'm getting the brunt of the stress and anxiety directed at me because I'm the safe one to target, but it's still hard. He's without antihistamines and it's taking a huge toll. Plus, this is all happening right before finals (there was no way to schedule it at a different time).

The point of this set of challenges is to see if the tolerance my son had gained in October is still present three months later. The mouse studies have been very encouraging. However, there's also an element of Flowers for Algernon in all this. There's the feeling that it can't last. Can a medication really permanently change the user after just a few short months of use?

What does change even mean in this case?  Does the FAHF-2 medicine reset the immune system, or retrain it in some way? (I think that's what most researchers think.) Does it create an environment where the balance of good bacteria needed to symbiotically "tag" proteins in some way to pass them through the intestinal wall is magically restored? (This is more what I think.) Does it work in some other mystery way? It's really weird to be using a medication where no one has a clue why it works or what it does. While the side effects of this medication are minimal, the science of the medication is actually pretty far out there.

One fun new option -- Aero bars
(through a dealer in North Dakota
who buys them in Canada)
"What has changed?" you ask. Well, we've been a LOT more casual about cross-contamination and new foods. I now make my daughter's Nutella and peanut butter sandwiches with a (gasp!) real knife on our kitchen counter. This Christmas was filled with new brands and even with items that probably had either peanut or milk contamination. Because he's still allergic to raw milk (we think), we have not had a lot of truly new options, but we are a lot less concerned about trying a new brand of a food we're already using, like bread or chips.

The irony is that these foods probably wouldn't have caused a problem before the trial. One of the useful things we learned from the trial was just how high our son's threshold for peanut really is. A lot of the fears I had about cross-contaminated foods, pans, etc., seem silly in retrospect. In a sense, the study has given me permission to shake off the party line of food allergy training over the last few months.

I realize that will make a lot of people reading uncomfortable. There is no way to know what a child's threshold will be at any given time, or what the true allergen content of a "may contain" food is, so there's always some risk. However, one of the things this study has brought home to me is that we will always be taking a risk from this point on. We are never going to know if/when this medication wears off. We are never going to know with 100% certainty what he can tolerate...until he actually tolerates it. We are always going to be pushing the envelope and need to be prepared for reactions. (That will be especially true as we re-introduce baked milk, as soon as this round of challenges completes.) The clinical trial is over, but the real experimentation for us really starts now.

One of my readers asked if we're going to start adding daily peanut after the trial. Great question. His new tolerance hasn't depended at all on actually consuming peanut. Would daily peanut expand his tolerance balloon even further? That will definitely be something to discuss with the clinical researchers and with his own doctor.

The bigger question for us is: is this a reset on all his allergies? Should we pursue a straight-up milk challenge? Go back to baked milk for a while? Run his RAST numbers and see where we're at? Pursue component testing for hazelnut to see if we can knock it off the list? All of the above?

I suppose when we signed up for this trial that I was hoping for change. I'm clearly getting what I wished for. We don't know what we're walking into at this point, but we do know we've come far enough that we're not going back.

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  1. Can you share the dealer in North Dakota's name where you got the candybars? Im following your posts daily, as I am really looking forward to your next challenge results.

  2. Yes, absolutely:


    FYI, I did post a brief update on Facebook about the challenge if you didn't already see it:


    I'm going to write a summary post with all the lab stats after our Monday visit. That should just involve eating applesauce and sitting around bored all day. Best kind of hospital trip.

  3. Lady, God bless you for your blog. I'm anxiously awaiting your next post on the FAHF-2 challenge!

    Do you have any information about how the rest of the patients fared in the trial? Or what the researchers' plans are for releasing this as a product? One of them wrote in a paper that they intend to get FDA approval - the idea of running phase III clinical trials, without the financial and technical resources of pharma industry behind, for a product that doesn't need it just seems crazy. We'll all be waiting another decade.


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