I haven't written about our visits to Duke in a while simply because we haven't gone in a while. Our last visit was the first week of December, and we don't go back until the second week in February. Abigail is on the maintenance dose which means we no longer have to go every other week to increase her dose. We go back in February for blood work, in April to discuss her pending food challenge and the end of May for her food challenge.
Speaking of food challenges, they've started for this study. The first food challenge occurs 12 months after entering the study. It's double blinded so that each child will get both a round of peanut flour and oat flour. They do that because nausea and vomiting can be a side effect of both a peanut reaction and pure anxiety. When I talked with our doctor late last week, 6 children had already completed their food challenge, and another 2 were schedule for each week over the course of the next couple of months.
The first 3 kids to do their food challenge ended up being on the placebo, and will have to re-enter the study. They're guaranteed to get the peanut protein this time around. There were mixed results on the other 3 that were getting the peanut protein. They didn't see particularly good results on the first two children, and it sounded like there were some extenuating circumstances for both. However, the third child tolerated the full dose of peanut flour. Did I mention that it was the equivalent of 8 1/2 peanuts?? I know it's just one child, but I couldn't help getting very excited when I heard the news. Only time will tell, but it is very encouraging and makes our food challenge something to look forward to as opposed to dreading!
It's believed that just a small amount of daily peanut protein, over time, will re-train the immune system to accept the offending allergen as normal. What Abigail's doctor explained was that the immune system is very slow to respond. A year may not be long enough to re-train the immune system. So, the results of the first food challenge aren't necessary indicative of the final outcome. Between me and you though, I'll take 8 1/2 peanuts all day long!!
We've been on a strict avoidance of all peanut products since my daughter was diagnosed with an allergy at 18 months. Abigail is now 9 and our family is blessed to be participating in a Clinical Trial at Duke Hospital (now UNC Hospital). Reading every label on every food item I purchase has also given me a strong sense of what it takes to eat healthy. So, here's our journey to eating healthy and becoming peanut allergy free!
5 comments:
Wow...it sounds promising!! Our allergist at UVA was certain there will be a "cure" for peanut allergies by the time my son was in middle school -- that's still 8 yrs away. But, it makes me really appreciate what you and the other families are doing by participating in these ground-breaking studies! I hope your daughter knows how much she is helping other kids with peanut allergies! THANK YOU!!!!
Wow! That is encouraging news!
Mommy2Boyz - thanks so much! I read your comment to my daughter this morning. At 6, I don't think she sees the full picture of what she's doing. She's being such a good sport about being in the study. Every once in a while I get some push back about taking the drops, but for the most part she's been very cooperative. For her, it's about the possibility of eating the birthday cake at a friend's party or that special snack at school. So, it's nice to remind her of the bigger picture. Thanks again!
I just found your blog... it already looks like a great outlet for me. My daughter (she is 29 months & was diagnosed at 12 months) has a severe peanut allergy and I am trying desperately to get her into Duke's study.. any tips? This is so hard for me. I know my husband worries too, but I feel like I am THE ONLY one who really carries the burden. I would appraciate any advice. Thanks so much for sharing your story. -Jenna
Jenna - so glad you left a comment. I totally understand. You do carry the burden. She's a toddler and totally depends on you to make sure that all of her surroundings are safe. I hate to say that that's not going to change as she grows. I still carry Abigail's allergy burden although at 7, she is now her own advocate in many circumstances.
I'd love to pass on some names of contacts at Duke. They're taking new patients. E-mail me.
Melanie
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