Ayden turned five in July, which meant he finally was in the age range to participate in the STX209 trial I've posted about a few times. At the time, we were unsure about putting him in it and actually had him on minocycline to see if we could see some improvement from that. With only minor changes happening with the minocycline, we decided to do the pre-screen for STX 209 to see if Ayden even qualified and what all the trial entailed.
Turns out, he did qualify for STX 209. We decided to go ahead and enroll him in the trial back in August. Our nearest site is in Chicago, so it took at a little planning. See, the first three visits are each two weeks apart and then there are two more visits about 4 weeks apart that follow the initial three visits for a total of 5 visits. In fact, the study actually includes 7 visits, but they combine the first and last two into one. It is a lot of travelling for us. Each visit is a one day trip to and from Chicago (4 hours each way). We decided to enroll him anyways after all the amazing things we have heard regarding STX 209.
Well, our initial appointment was set for the first week in September. A week before our appointment, we were asked to delay a month, pushing the first visit out to the beginning of October. A few weeks before that appointment we once again were rescheduled but this time for just a week later. As I'm sure you're guessing already since I haven't mentioned we started yet - just two days before our appointment we once again were asked to change our appointment. Asked is probably isn't the right word...told we had to is better. Our first appointment is now scheduled for October 29. This pushes two of our visits into the holiday season (one of them actually has to be between December 20 and 25 - that's some nice planning) not to mention the stress of driving to Chicago in winter. I'm incredibly frustrated at this point but what can we do if we want him to participate?
I'm hoping this will all be worth it for us. If not, at least I know we've helped put others whom the drugs IS working for one person closer to having the drug FDA approved. In the meantime, look forward to our first visit update *hopefully* around the end of this month.