Research Study: 3rd Visit

We made another trip up to Baltimore last week.  We knew the visit was going to be short, since this was the "safety visit".  There was no testing (other than the pregnancy test--still so weird!), just checking on vitals and reviewing the side effects (she hasn't had any).

The only thing that I wasn't expecting, or didn't understand from the initial visits, is that next week she will increase her dosage again.   Currently she's taking 0.7 ml of Placebo/Rivastigmine twice a day.   The new dosage will be 1.4 ml in the morning, and 0.7 in the evening.   They want the bigger dosage in the morning so that they can better monitor side effects.  Of course, I immediately think that night time would be better because she'd sleep through any side effects (maybe).   

The main side effect that they are trying to avoid is nausea and gastrointestinal distress.  Increasing the dosage incrementally seems to lessen the severity of the nausea (so the original study discovered).   We'll see.   I'm still assuming she is on the placebo.

That said,  Hannah has been making progress in her school work, and her sentence structure has been a bit more mature and complex than in the fall.   Of course, she's also a young teenager, so I couldn't tell you if it's just a natural growth pattern or if it's a result of the medication.   If she is on the real medication, the changes I see are very nuanced--she's still totally regular Hannah--no big bells and whistles announcing any changes.  I can't tease out any specifics at this point.

Maybe things will be more obvious after she's been on the doubled dose.     I'm still really excited to help move this research along!   And while we were there, I managed to get Dr. Capone to agree to come to Richmond in the fall to speak about current research trends in the Down Syndrome Population!

(if you've missed the previous posts about this research study, you can start here)
(if you want to read more about Hannah's experience in this research study, you can follow along here)