July 16, 2009

We'd made a decision to try something for Grace. Those of you who have SMA children know about valproic acid and carnitine, but those of you don't probably don't. Valproic acid and carnitine are currently being used in clinical trials to determine their efficacy in strengthening individuals with SMA. At this point there isn't clinical proof to show that they work, but there is some anecdotal evidence from families who've tried it with their child. We've seen a regression in Grace's ability to stand for a set amount of time over the last few months, so we decided to try valproic acid and carnitine. We really made the decision after the FSMA Conference in Cincinnati after talking to families and researchers about it. There are potential side effects, and we've decided that we're going to try it until we see any adverse effect, at which point we'd stop right away. Grace will be getting a prescription from her doctor in Iowa City, and we hope to start in the next few weeks. We'll keep you posted.