If I didn't advocate for my own kid, who would? I would go to the ends of the earth to do something to help my daughter. I would drive her to a clinical trial as needed to get her treatment to desensitize her allergy. I am hopeful for the peanut patch to get FDA approved so that our local allergist can prescribe it. Here is a story about some of my latest research on this effort:
SO! A friend of mine saw a flier in her allergy office about peanut patch trials and sent it my way (THANK YOU Dawn!)
So I did some googling, and eventually figure out i need to look at www.clinicaltrials.gov. I find the EPITOPE study. If you have some time, look around that website a bit, it's interesting.
It (initially) showed only three places doing the EPITOPE study, with study leads and their contact info.
Mount Sinai Medical Center, NY
Arkansas Childrens, AK
UNC, Chapel Hill, NC
The Mt. Sinai location matches up with my google search on Jaffe Food Allergy Institute from the flier.
I decide to email the three doctors. I get Dr. Kim from UNC Chapel Hill to answer a few questions for me. I ask about other locations closer to DC possibly doing this study. He reached out to DBV Technologies (the company doing Viaskin Peanut Patch) and realized there was actually 7 places involved with the study and they were surprised to actually see only 3 listed on the clinical trial site. (so I just checked and it now lists the 7 places... YAY for me pointing out an error on a gov website). John Hopkins should be involved and he puts me in touch with the clinical trial manager.
JHU writes me back and asks for my daughters name, birthday, address, list of allergies we avoid. They let me know that for any future trials they send a letter to the families on the list who qualify. After that they conduct a lottery (because there is so much interest). ANYWAYS, because of my due diligence, and the helpfulness of a Dr at UNC that answers emails, I have Andi on a clinical trial list at JHU.
Dr. Wood is the Director of Pediatric Allergy and Immunology at JHU. A friend of a friend saw him and said he was wonderful. He also wrote Food Allergies for Dummies.
I'm hopeful that my efforts can make a difference for her. I'd really like to get her the peanut patch or in an OIT trail before she enters the school system.
THEN just yesterday i see this news:
and
She will be 4 in July, and the patch looks like it will available later this year for ages 4-11.
When i asked about treatments like this, our Dr said she will only do something FDA approved. Other doctors doing OIT are doing non-FDA approved treatments and closest ones to us would be Philadelphia or Virginia Beach... possibly too far to do Dr. appointments. So I think our best bet is the patch later this year, or getting into some type of trial.
ALSO: Shout out to Judi who reminded me to check out ROTTEN on Netflix. Episode 2 is called "The Peanut Problem". While it leaves out a lot of things, it's an excellent look at the food allergy epidemic and how scary it can be. It's definitely worth checking out.
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