I get a lot of questions about the STX209 drug trial, so I'm going to use this platform to try and answer them all.
First off, if you want to read more about the trial itself, the whos, whats, wheres, whens, and hows, you can go to http://www.clinicaltrials.gov/, and search for STX209.
And on a side note, let me just comment on how much the above sentence sucked to type, on a keyboard where the "h" doesn't work. Feel my pain.
1) Do you have to stay in Chicago while the boys take the medicine, or can you go home?
We can go home. This trial involves 5 trips to Chicago in 4 months, which is easily the most challenging part of it. Eight hours in the car, one way. No matter which way we go, it's a full day in the car. I figure it'll get easier, every time we do it, but it's definitely the hardest part.
2) How long will the boys be taking the meds for the trial?
It looks like it'll go until mid-December. We don't know if they are on the drug or the placebo. The doctors don't know either - as they put it, only the computer knows, right now. At the end, in December, we'll find out whether they were on the actual trial medication, or the placebo, or some combination, resulting in either a high, medium, or low dose. At that point, depending on what kind of results we saw, we can decide whether we want to continue the study and apply for an extension.
3) Do you have to log their behavior after each dose?
I don't specifically have to keep a log, no. They will ask me for updates regularly on how it's going, but they didn't give me any idea what kinds of changes to look for. I suppose they didn't want to put ideas in my head, to keep me as objective as possible, but I already know somewhat what kinds of behavior changes we could see, because I've talked to people whose children have been in earlier phases of this same study.
4) how did the boys do with the evaluation?
They did pretty well. The blood draw was painful, figuratively and literally, just as I imagined it would be, but I bet there's not a drug trial in the world that doesn't require some blood draws. Zack screamed, AJ sobbed, and I managed not to do either of those things.
The EKG I was super worried about and it was really easy - Zack went first, because AJ always wants Zack to go first with everything - and Zack doesn't mind - and he just watched, curiously, as she stuck the monitors on his chest, arms, and legs. AJ watched as well, and then came over and stuck his arm out. he was ready for his stickers too!
The urine sample was the part I was most worried about, actually. They aren't even remotely potty trained. If anything, they are negatively potty trained -- they'll hold it and wait for the pull up to pee, rather than pee without it. So my mom, back in the day, used to be a pediatric nurse. And do you know how they get urine samples from infants? They put a specially shaped bag over the baby's "thing" and then just wait for nature to take its course. And that, my friends, is exactly how we got a urine sample from AJ and Zack. It was so simple.
5) how do the boys swallow the pills?
I bury it in a spoonful of applesauce and they gulp it right down. I'm pretty sure they know it's in there, but most of the time they are cooperative.
6) When do you think you'll start to see some changes?
It's hard to say. I do think this med takes some time to get into a person's system and start to take effect. Since they started on Monday, I had it in my head not to even think about it until Friday. Now that it's Friday, I'm thinking I'm going to try to hold off expecting anything until Monday. But I also know, it might be a couple or few weeks.
I have to get back to fighting with the good computer now. You know, the one that won't start up. have a wonderful day!
Word of the Week 3/7/2020 Blur #WotW
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