Monday, June 30, 2008

New plan I was a little annoyed with our new neurologist. I waited all day for him to call and was pretty irritated that he wasn't going to get back with us today and then he finally called just before 8pm tonight! So the plan is to start vigabatrin tomorrow. This is one of the major drugs used to treat infantile spasms (some even use it before ACTH) and it's one Reagan has not tried yet. It works by a mechanism different than anything she's tried up until this point and since everything she has tried hasn't worked...maybe this will. It's not approved in the US (it can potentially cause permanent peripheral vision loss although I think it's very uncommon to see that with short term use for IS). You have to order it from Canada or Mexico...luckily we've been given some by our generous friends in CA to have on hand just in case the Ketogenic diet didn't work. So that's the plan. Start tomorrow... 250mg in the morning...250mg at night. We'll do this for 4 days or so and then potentially increase it to 500mg twice a day after that. According to her doctor, we should probably see some response to this within weeks (instead of months) if it's going to work for her. Reagan's still having a lot of seizures (even with the increased dose of clonazepam), so I'm just glad to be going on to something new. And she's just been so has to be the clonazepam!! We're going to take her back down to 2x a day and then probably decrease it further as we increase the vigabatrin. I spoke to the dietician this morning and we're decreasing her ratio down to 2:1 for this next week. Reagan is still stuffy...I think she really might be getting sick. I wonder if I should take her in to see her pediatrician. But I'm afraid that she may just pick up more than we get rid of with a trip to the doctor's office. Please keep her in your prayers because we all know what a little sickness can do to seizures.


Heather said...

O.K., Reagan, listen up .... start feeling better, clear up that stuffy nose, get some rest and let's put these seizure behind you, alright?

JSmith5780 said...

Good luck with the Vig. For us, it was Austin's miracle drug. I think it was the 8th drug we tried and he was SF in 4 days!

I don't know Canadian or Mexican pricing but we ordered from and it was $53.50 for a box of 50 sachets. They are located in the UK. Just some information.

Regarding vision. Austin was just recently weaned from Vig. He had been on it for nearly 4 years. We'd never had luck removing it before now, so knock on wood we are okay. Anyway, we had an ERG done every 6-12 months. The ophth saw no changes to his peripheral vision during his use.

Good luck, I'll be sending positive vibes.