Starting Sabril

Bug started her new medicine for infantile spasms last Monday. It's called Sabril, also known as Vigabatrin. It's a powder that we mix with water and dispense to her through a syringe. For the first 3 days she was on a half dose of 6ml worth of Sabril and then on day 4 she started the full dose.

She will only be on Sabril for 2 months. The longer you're on Sabril to more likely you are to encounter the side effects. A common side effect with Sabril is vision loss or vision impairment. We will be  seeing Bug's neuro-opthomologist once a month for the 2 months she's on the Sabril so he can monitor her eyes.

The first few days that Bug started Sabril she was so drowsy, sleeping more than 15 hours a day. But that wore off and she gained her energy back... with a vengeance! She is now going through a little bout of insomnia. It's another side effect of Sabril but is supposed to wear off with time as she gets used to the new medicine in her system. In the meantime her neuro, Dr. Coleman, suggested we give her 1mg of Melatonin at night (along with the Clonodine) to help her sleep. Melatonin is a natural hormone the body produces to help you sleep, it's just an over the counter supplement at pharmacies. It's really helping! I mean, she's still not back to sleeping through the night but she's sleeping more than she's awake overnight now and that's a huge improvement since 2 days ago!

Bug's neuro also that he talked to the epileptologist here in Oklahoma and he suggested we try Vimpat if Sabril doesn't work. So it's nice to know we have another option before steroids.

Bug will have an EEG the first week of February to see if her background activity has changed. From what we can tell her seizures/spasm activity has gone way way down!
We'll see...