Friday, March 23, 2012

We're In


Yikes! A few weeks back, I wrote an entry about the FAHF-2 clinical trials going on here in Chicago. My husband, son and I have been debating back and forth ever since about participating. There are several reasons it's a complicated decision:

  • Study participants are required to swallow 30 pills each day. That's tough for a kid who struggles to swallow one!
  • The commute time and time out of school is pretty significant.
  • As with any clinical trial, there's a chance of being in the placebo group and we're not guaranteed access to the medication after the trial if we are (although it sounds like they will try to make it available to all participants if the trial goes well). 
There's one last biggie though: there are two direct challenges required, one before the dosing starts and one after to demonstrate the efficacy of the drug. That means they're going to give my kid peanut and let him get to the point where they're absolutely sure he's reacting. Wheezing. Vomiting. Drop in blood pressure. They promise they won't let it go too far...but it has to go far enough that they're certain it's a real reaction. It will be done with an IV in and rescue equipment available, but there are still no absolute guarantees.

My son is a truly awesome kid. We talked a lot about the risks with all this and he really wants to go forward with  it. He's not even as hopeful as I am that this may be the real cure -- he just thinks it's the right thing to do.

This is going to be short because I want to make sure the researchers are good with me blogging on the topic. We have our consent visit coming up next month, so I'll post more after that if it's still appropriate.

FYI, the study is apparently filling VERY quickly, so if you're in Chicago, now's the time to make the call!