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A mom’s perspective on a food-allergy trial

We've written here about the food-allergy work being done by Kari Nadeau, MD, PhD. But what's it like for the parents of children with severe allergies who participate in one of Nadeau's trials? As the kids are gradually exposed to foods they are highly allergic to, how do their moms and dads feel? That was the focus today of an NBC online piece, which includes excerpts from e-mails written by a mom of one study participant. A few of the passages jumped out at me:

January 27, 2012: Tessa will officially start the clinical trial at Stanford Hospital Friday morning!

This journey we are about to embark on is a massive one ... and not to be underestimated. Not only is the time commitment great ... this will be physically and emotionally taxing on Tessa as well. It will be scary for her (and us) at times as she will be reacting to the foods all throughout. Kids can have anything from stomachaches to hives to vomiting, etc.

We were in bed tonight and [Tessa] said “Mommy, I am scared. What if I can’t tell that I am having a reaction and it gets out of control like the last two times when I almost died?” It was a heart-wrenching conversation.

...

February 26, 2012: Tessa is now up to the equivalent of …  about one ounce of milk, four peanuts, [and] three whole crackers.

She has now had three home doses at this level and has not even had the slightest reaction (knock on wood) … I watched her eating crackers with her friends the other day ... which was a very weird sight to see her eating “normal” food socially like that among friends... and had to make sure that her friends were very clear that she is only able to eat this food because of the drug she is on [Xolair, which suppresses the allergic reaction].

Mentally she is doing very well, too … In fact, she is the one that keeps telling me to “chillax”.

...

April 10, 2012: ... There were a few extra M&M’s on the side and Tessa asked me to eat them and I said, “No thank you” and she insisted that I eat them. It was the first time in nine years that I have ever eaten anything “unsafe” in front of Tessa. It was a very odd moment and a feeling that I just don’t think I will ever get used to.

The article accompanied a Today Show segment during which Nadeau talked more about her work. And, as a reminder, she's taking questions about food allergies this week as part of our Ask Stanford Medicine series.

Previously: Ask Stanford Med: Pediatric immunologist taking questions on children’s food allergy research and Searching for a cure for pediatric food allergies

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