My first post is of an e-mail I sent to family and friends after our first visit. I've since been encouraged to document our journey in a blog. It will be my first attempt at blogging so I guess I'm embarking on 2 journeys so to speak.
Here's the e-mail....
Abigail officially started her Sublingual Immunotherapy for Peanut Allergy, or in other words, her clinical trial to hopefully decrease her allergy to peanuts.
It was a long morning that required an IV, blood work, skin prick testing and a saliva test. Abigail did fabulous! She also got her first dosage of either the crude peanut extract (we hope) or a placebo. They start with such a tiny amount (applied with a dropper under her tongue) and they don't expect a reaction until maybe the 4th or 5th trip. We'd actually get really excited if she did get a hive or some sign of reaction because we'd then know that we were getting the peanut product. We will be going to Duke every other week for a year to continue the build-up. At each visit she will receive a higher dosage. If she can tolerate it, then we take that dosage home, and she gets it every day. I have to keep a detailed log and watch her for symptoms for 2 hours after the dosage. At the end of the year, she does a food challenge which will last about 10 hours (I'll give out more details on that as we get closer). At that point, we officially find out what group she was in. If she was in the placebo group, we re-start the study with the peanut extract for another 12 months. If she was in the peanut group, then if she passes the test, we continue building up her tolerance for another 6 months ending the study at 30 months with another food challenge. If she passes that one, then we will be instructed to add peanuts to her diet and to eat a normal portion on a regular basis. I don't have to tell you guys how big a deal that would be! To go from a lifelong possible risk of death if she ingests even a tiny amount to purposely eating peanuts to maintain her tolerance.
On a side note, there is another study at Duke that started several years before this one where the children ingest peanut flour. Some of those children have finished and are now trying to decide what their favorite peanut product is because they are eating it every day. So, there are positive results. Our study is a subset of that one, overseen by the same doctor and is being conducted in an effort to find a way to better commercialize a treatment.
So, we will be traveling to and from Duke more times than I care to count in the next couple of years. Lucky for us, both sets of parents live in route so Nathaniel will not need to sit through each 2 hour visit. The staff was great. She is assigned a personal nurse at each visit that is there to pretty much coddle her. There is a huge closest full of games, puzzles and movies. They bring in a menu with snacks and such that she can order from. And there appears to be a whole social network of kids and parents. While we were there, we met 3 other little girls her age doing trials for milk and eggs allergies. I've been told by other moms with kids in the study that their children actually look forward to the visits because of all of the special attention.
Dave and I would like to thank everyone that sent us well wishes and that offered up prayers for our visit yesterday. We went in with some apprehension and lots of questions. Abigail was really brave. Considering we've only made the drive once, I can say it wasn't that bad. Ask me again in 6 months. At least we've got the summer to get into a routine.
Blessings,
Melanie
View from the parking deck. The bridge to the building is on the left.
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