February 11, 2011
Research Study: 2nd Visit
We begin tomorrow morning!
We spent the day at Kennedy Krieger in Baltimore; Hannah taking cognitive and memory tests, while I filled out paperwork and parent surveys. One would think that a few hours of that would put Hannah to sleep. But she came out bouncy and cheerful.
We had a late lunch and then met with Dr. Capone and his research assistant. There was one more questionnaire, and a little review of the study requirements (keeping track of dosing and any side effects or illnesses). I thought they were going to administer the first dose while we were there. The original study paperwork said that Hannah would get the first dose and then she'd be monitored for 4 hours. I was expecting to spend another night in Baltimore! Apparently, some subjects get a bit nauseous as they adjust to the medication (or placebo...). But they lowered the initial dosing level, which has reduced the nausea. So we start tomorrow morning.
The first 2 weeks are a very small dose-- 0.38 ml twice a day--then it's doubled for the following 18 weeks. We should be done with the study on July 1st.
Today's visit was a little dull. I think I was expecting a little more fanfare or excitement, but they just handed over the bottle and medicine syringes and that was that.
The only really interesting part was when Hannah surprised Dr. Capone with her new facial hair.
(I think she looks like Rich Uncle Pennybags from Monopoly)
I think this picture is also the debut of her new "teen-like" glasses! She's been updating--hair styles, glasses, shoes/boots. I can usually influence her choices in clothing if I offer things like, "Would you like to wear this gray t-shirt, or the stylish green one?" She always goes for the "stylish" choice. Of course, it would be helpful if I could actually be sure I was leading her in the right direction...
To read more about the research study, go here