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The State of Caitlin.
Jan. 9th, 2009 10:58 amA good week came to end this morning with a small seizure. The good news is that it ended right away. The bad news is that I need to spend the rest of the day hovering in case she has her big one. It sort of kills any other plans.
Otherwise, it was a great week. Everybody at school was impressed by the lack of any skill regression over the holidays.
The biggest yays of the week belong to Vigabatrin. As![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
rarelylynne mentioned, an FDA committee unanimously voted to approve Caitlin's seizure drug. This is a big deal. Vigabatrin is the only drug that works for Caitlin. Before she started it, she had 5-7 series of spasms per day each lasting 5-10 minutes. It wiped her out. Also, the drugs that had minimal effects were all barbiturates that kept her perpetually stoned. Vigabatrin cut her seizures down to one per month. Without Vigabatrin, Caitlin wouldn't have made all of her gains.
Vigabatrin is used throughout the world, but the FDA didn't want to approve it since it can cause permanent loss of peripheral vision. For people in our situation, though, it's worth the risk.
Without FDA approval, we were forced to buy the drug from a Canadian pharmacy. This has been very expensive for us, and occasionally we've had to fight with Customs after they seized shipments.
It will be very nice to get the drug from our local Target Pharmacy. :)
Otherwise, it was a great week. Everybody at school was impressed by the lack of any skill regression over the holidays.
The biggest yays of the week belong to Vigabatrin. As
rarelylynne mentioned, an FDA committee unanimously voted to approve Caitlin's seizure drug. This is a big deal. Vigabatrin is the only drug that works for Caitlin. Before she started it, she had 5-7 series of spasms per day each lasting 5-10 minutes. It wiped her out. Also, the drugs that had minimal effects were all barbiturates that kept her perpetually stoned. Vigabatrin cut her seizures down to one per month. Without Vigabatrin, Caitlin wouldn't have made all of her gains.Vigabatrin is used throughout the world, but the FDA didn't want to approve it since it can cause permanent loss of peripheral vision. For people in our situation, though, it's worth the risk.
Without FDA approval, we were forced to buy the drug from a Canadian pharmacy. This has been very expensive for us, and occasionally we've had to fight with Customs after they seized shipments.
It will be very nice to get the drug from our local Target Pharmacy. :)
