Heard from dr.

So our amazing doctor emailed us back...already. We can't believe how fast she was! We truly are thankful for her expertise. My mother-in-law reminded me how blessed we are to have her directing Oliver's care especially considering she is something of a rock star in the TSC world.

She suggested w e go down on the new med to a previous level that didn't cause toxicity. Tomorrow we start the paperwork to start Sabril (Vigabatrin). It will probably take a day or so to figure out which pharmacy we can get it from, etc. We've decided to do this because we really, really want these spasms to stop and this quote from her email helped us feel more comfortable:

"we think that kids are “safe” with regard to possible visual side effects for the first 3 months---so would give time to see how he does, and then possibly start diet with goal of then tapering vigabatrin"

-We'll keep trying to get an appointment with Charleston for the next few days. If that doesn't work out we'll start planning our trip to Boston. She said they are "happy for us" to start the diet with them and I'm sure we could get in probably as quickly as we could arrange the travel. It helps to already be an established patient :)

I feel much better now (happy sigh). We don't have many treatments to "try" but, at least we have a plan about how we are going to move forward. Isn't the ability to email your doctor, and hear back within an hour or so, super cool? Gotta be thankful for that!