It's been quite an emotional roller coaster ride this spring. At our last visit to Duke in January, we discussed the details of Abigail's pending peanut food challenge. At that time, we were all set for this summer. In March, we received an e-mail from our doctor stating that the protocol had changed. They've decided to extend the study from 3 years to 5 years. My heart sank.
Earlier in the year, they selected 10 participants, those that have been in the study for 3 years, and who had passed their original food challenge at the year mark, to do the 3 year challenge. This challenge consists of eating the equivalent of 16 - 17 peanuts. Less than half of those 10 passed the desensitization challenge and were able to go onto the tolerance challenge. The thinking is that SLIT (Sublingual Immunotherapy Treatment) takes longer, much like traditional allergy shots, and the additional 2 years will allow for more changes in the immune system.
At this point in the e-mail, I'm almost in panic mode. We've been saying to Abigail for months now, "You're almost there.", "You can do this.", "It's countdown time." and "You can make it till July." Obviously, we're operating on the thought that she's going to pass her challenge. Now, I'm not so sure, and what I'm going to tell her?
I was relieved to read further in the e-mail that there is a provision in the study protocol that allows for a food challenge sooner than 5 years if the IgE is 15 or less and the skin test is 5mm or less. Whew!!! Those numbers were based on their experience with the peanut flour studies, and the fact that the kids from the SLIT group of 10 who did pass both food challenges had lower IgE numbers. Abigail's number was 7.54, and her skin prick test was almost non-existent. We're back on for July!!
Fast forward to May. I call the now transferred staff at UNC Chapel Hill to see about scheduling her food challenge in July. In talking with the nurse that's been there from day one and more or less coordinates all of the peanut clinical trials, I find out that they are re-thinking the 3 year challenge provision. There goes the heart sink again. She explained that the additional 2 years may mean the difference between being desensitized and being tolerant. Obviously, as disappointed as we may be, we choose the cure over the band-aid. On that call, I did find out that we could skin test for tree nuts, and if the test backs up Abigail's negative blood test results, we could introduce tree nuts. That's a big deal, and helped ease the blow of potentially staying on the SLIT drops for another 2 years. We'd know for sure after the staff met and made a final decision.
I got a call last week. We're back on! Told you it was a roller coaster ride. Here's how it will work. At the 36 month mark which we've actually passed (it was mid-May, but over the years, we've pushed our annual visits to June to get past end-of-school commitments), Abigail will do the desensitization challenge. Looks like this year it'll actually be July due to summer camp and their schedule. On challenge day, she'll consume doses of peanut flour up to the equivalent of 16 to 17 peanuts. If she can finish the challenge, then she's considered desensitized. We go home, and stop the drops for a period of 1 month. In August, we go back for her tolerance challenge which is the same dosages up to 16+ peanuts. If she doesn't tolerate the full amount, they look at the dose where she started showing symptoms and step back one. That amount will be her tolerance level.
We're excited and scared at the same time. I'm praying that she passes both challenges with no issues. Having her be tolerant to peanuts would be so much more than what we were asking for when we started this trial. My hope then was that she could consume products processed in a facility that manufacturers peanuts, and that I would no longer have to worry about accidental exposure. Being in a position where she needs to eat peanuts would be amazing!
Let's hope there are no more changes!
