Skip to main content

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.


Follow me on Facebook or Twitter  

Popular posts from this blog

Turn Trash to Treasure: An Easy Way to Help SAGE and the Corvallis Environmental Center!

Clear clutter and unwanted items from your home and you can help raise funds for the Corvallis Environmental Center--all year long!  Just take your unwanted items to an ARC Thrift Store where they sell them and donate the proceeds to the CEC.  It easy!  Here's how:

1. Collect Items in Good Condition

Not all donate-able items are eligible, so check out the list of items that will raise money for the CEC:
www.corvallisenvironmentalcenter.org/turn-trash-to-treasure
2. Put a sticker on each eligible item Stickers are located in a big envelope on the window outside of the CEC office at 214 SW Monroe Ave., Corvallis

3. Drop-off Items at The ARC! Items can be dropped off anytime during store hours at either location.

The ARC Thrift Stores:
928 NW Beca Street, Corvallis (541) 754-9011
936 Main Street, Philomath (541) 929-3946

Hours:
Monday-Saturday: 10am-5:30pm
Sunday: 12pm-5:30pm
Thanks so much for helping support SAGE and the other programs of the Corvallis Environmental Center!!!

Beans, Beans and More (or Less) Allergenic Beans!

We have a little good news this week: my son passed a home bean challenge for both pinto and cannellini (white) beans last night. Hooray!

At our last allergist visit, they ran the numbers on a number of varieties of beans and many were Class 0, with values like 0.68. My son's doctor thought it was reasonable to try these at home.

Going to stop for a moment and interject: DON'T DO THIS WITHOUT YOUR DOCTOR'S DIRECTION. A lot of things go into whether home challenges are a good idea for your child: how serious the allergen typically is, how far the hospital, how experienced the parents are with recognizing reactions. Many doctors are not comfortable with this at all. But, in our case, it makes sense to do some challenges at home because my son tests slightly allergic to dozens of foods.

He has avoided all beans since around age five, when he started developing new allergies. First it was tuna. Then cashews. Then (to our great surprise), he suddenly became allergic to garbonzo be…

Best Food Allergy Tweets/Posts From 2013 ACAAI Meeting

Sorry, guys...I've been very busy the last couple of weeks, but just over a week ago one of the largest allergy and asthma conferences, the annual American College of Allergy, Asthma and Immunology, was tweeting its brains out.

Here were the tweets and (virtual) presentations I thought were most interesting:

ACE inhibitors are often used to treat high blood pressure. I believe Lisinopril was the one specifically mentioned. This goes hand in hand with the idea that older patients, especially men, can see changes in the severity of their allergic reactions as they age.

Here's an answer on the question many of us asked about component testing. Just as with RAST, the number itself doesn't matter; just the positive result.

Gross! But yes, give your kids the bobber after the dog/ brother/ mailman licked it.

Conversely, tree-nut-allergic individuals have a 30% incidence of concurrent peanut allergy. 
So stop blaming yourselves, FA mommies! I've said this consistently - Mother Natur…