T-minus one hour and thirty minutes until our appointment with our Neurologist to get the Vigabatrin going.  I’ve always thought on some level that this was going to be Marissa’s drug of choice for seizure control, but we’ve had excellent results with the keppra I haven’t given it much thought until recently.

Another bad night, but today has been unexpectedly light on drops.  42 spasms at 2AM, another 14 at 5:30, maybe 4 more at 10:30, two drops and no clusters since.  It’s a puzzle.

Mailbag

Marybeth from Kansas writes:

“Aren’t you concerned about your daughter going on a medicine that the FDA hasn’t approved?”

First of all, thanks for writing.  I’m not at all concerned.  Vigabatrin has a long history of use in Tuberous Sclerosis kids with great success- the numbers aren’t as good for Cryptogenic IS kids, but they aren’t zero, and the side effect profile isn’t as bad as some of the other drugs that Marissa has tried.  Some of the alternatives we haven’t tried have very serious side effects.

We’ve got to get Marissa’s seizures back under control.  While there’s no definitive link between long-term poor prognosis if you don’t, the effects of the seizures on her slow development can’t be denied.  She can’t sit, can’t crawl.  She isn’t talking more than baby babbles.  She can’t grab anything, and has only rudimentary control over her arms, usually as nothing more than a bludgeon or a plow, certainly nothing precise enough like playing or propping her head up with any lengthy success on her stomach.  This has to stop- seizure control is the way to stop it.  While I appreciate that the advisory board is recommending to the FDA that Vigabatrin receive USA approval for IS, it still hasn’t happened, and a quick perusal of their schedule doesn’t show it being up for discussion in the next few months.

Marissa’s Godfather complains that my dinner recipes all require one rare ingredient, only found during the full moon, or requiring a 10,000 mile trip to get the ingredient.  This isn’t true, but if you tell me that there’s a cure for Marissa available the second Tuesday of every month in the form of a rare plant flower high in the Andes that I’ll have to make an unassisted climb to get while humming the tune from Star Trek to make sure it doesn’t perish on the way back, I’m off, sheet music in hand.

A medicine shipped from any other nation in the world doesn’t seem like such a bad decision anymore, does it?

Fairfax Update

Fairfax decided one run on Chicago last July wasn’t enough, so he went back for the last few weeks and hit the aquarium while he was there, courtesy KC and Mama.

This Fairfax is off to Sterling, Illinois for another IS family.  Safe trip, Fairfax!