Starting the drug Sabril


Sabril is used to treat epilepsy. It is only for those who have not responded to other treatments because there is a 1 in 3 risk of permanent vision loss. Not total blindness, mind, but loss between a little of the periphery to tunnel vision. 1 in 3! Not great odds. Lydia already doesn’t see very well, as I’ve mentioned. She is exempt from the eye testing they typically do on Sabril patients because of her CVI (cortical vision impairment). CVI can improve. But right now we don’t know how much she can see, so we won’t know if she loses vision.

There was a lot of paperwork that as involved in getting this medication as you can imagine. Some of my favorite phrases are:

  • You are at risk of vision loss with any amount of Sabril.
  • Your risk of vision loss may be higher the more Sabril you take daily and the longer you take it.
  • It is not possible for your healthcare provider to know when vision loss will happen. It could happen soon after starting Sabril or any time during treatment. It may even happen AFTER TREATMENT HAS STOPPED. Oh great. My worry can carry on into infinity.


Here is where it starts to read like a fable with ill-fated animal characters –

  • Vacuolation, characterized by fluid accumulation and separation of the outer layers of myelin, has been observed in the white matter tracts in adults and juvenile rats and adult mice, dogs, and possibly monkeys…in the rat and dog, vacuolation was reversible following discontinuation of treatment, but, in the rat, pathologic changes were seen in the brain. (I wonder what happened to the monkey…)

Ugh. Animal testing. I feel sick.


Tremors, joint pain, sleepiness, low red blood cell counts, mood problems, upper respiratory tract infections and fogginess are on the list. Fun stuff eh?


The first two days Lydia slept heavily, continually, after I gave her the Sabril. I literally couldn’t wake her and messaged her doctor. She didn’t eat. Didn’t cry. Didn’t open her eyes. Today is the third day and she woke up this morning, looked around foggily for an hour before going back to sleep. She’s been in and out of sleep today and has had some seizures. But she’s had a lot less seizures than usual. She’s more jerky/myclonic than normal. And kind of a zombie baby. But I have a sniff of hope that this drug might actually help stop the seizures. I’ll keep you posted.


Sabril comes direct from the manufacturer to our house. No pharmacy can carry this stuff. When making arrangements for delivery, I asked the Sabril representative if insurance had been worked out to cover it. They said the first month is free and after that they have financial advisers. I asked around. If insurance doesn’t cover it, it will be around $2000-$3000/month … fingers crossed and re-crossed…