Another trip to Duke

We went to Duke this week for our 5th visit. It was very much like our last couple of trips with the exception that we got to meet our new Doctor. Our last doctor finished his Fellowship in June and accepted a position in Texas where he will be conducting his own clinical trial.

We met Dr. Kim who is very personable and has great bedside manner. He'll be Abigail's doctor for the next 2 years so I was glad she liked him. I liked him because he readily answered all of my questions, and I took a whole page of notes.

I was really hoping to see a concrete sign of a reaction. On a previous visit Abigail had some itching in her ears when they increased her dosage. This time she had some tingling in her throat, but it only lasted a minute or so. You can't refute a hive or rash. When a 6 year old complains about her ears itching or her throat tingling you question if it's psychological. Each day at home between visits, Abigail gets the increased dosage. After this visit, she had some throat sensation the first day at home, but not today. If we end up in the placebo group, we get to start the trial over with the peanut slit, but it adds an entire year to the process. At an earlier visit it was mentioned that most visible reactions occur after the 4th or 5th dosage increase. I was really pleased to find at this visit that that's not always the case.

There was an issue with the peanut slit given to the first group of children. It was a problem on the lab's end, not Duke's. Late last year, these children had to restart the trial, and were all given the real deal. Some of those children getting the peanut slit have had only mild to no reactions. So, there is hope. Bottom line though is if we are on the placebo, we deal and start over. Our family is committed to this study. If it takes 42 months instead of 30, then that's what we'll do. It's too important to Abigail's future and the future of millions of other children to not see it through to the end.

As mentioned, I took a whole page of notes. I'll share most of that information in future posts, but I did want to address a question from a previous post. I've been asked what the drop dosage equivalent is in milligrams. I still don't know, and neither did Dr. Kim. Because it's a liquid dosed in drops under the tongue, it's difficult to compare it to an ingested peanut powder measured in milligrams. I do know that we'll work up to drops containing 2 mg of peanut extract in the next 8 months and will maintain that dosage until the end of the study. Abigail will be challenged to 5 mg of peanut flour at her 1st food challenge and up to 10 mg at her 2nd food challenge. It was my understanding that the theory is that your body doesn't have to be exposed to a large quantity of peanut to build up tolerance.

I've included a picture of Abigail in the trial room. It's where we go after we've checked in at the desk and been to the lab for vitals, height and weight. It's in this room that we meet with the doctor, take the increased dosage and sit out the hour and a half while we wait to check for reactions. In this picture, she's enjoying the highlight of the visit, the food. Let's see, today's spread includes bagel, pretzels, ice cream and juice.