Another Waiting Game

When we left off, Rayleigh's pediatric neurologist told us to wean off Topomax and she would stay on the Trileptal and Clobazam alone until we started the Ketogenic Diet in August. After a couple days of only taking Topomax at night Rayleigh began to have seizures twice a day rather than just once. The seizures remain only happening while she's asleep, so she went from having one during her nap to having one during her nap and then a second about an hour after falling asleep for the night.

These types of changes are not uncommon when weaning off of an anti-convulsant medication but when it continued for a week we called her neuros office and spoke with the doctor on call. It was not her usual ped neuro but we had spoken with this one before. She told us that based on Rayleigh's weight we can go ahead and increase her Clobazam from 25 mg daily (1 pill in morning, 1.5 pill at night) to 30 mg daily (1 pill, 3 times a day). We hadn't tried splitting her Clobazam into 3 times a day like she's been doing with her Trileptal. 

So we gave her 1 pill with her 2ml Trileptal right after I got off the phone with the doctor. That night she did not have a seizure.

In fact, she has been back down to 1 seizure a day, at naptime, since we increased the dose of Clobazam. Its weird though, because Clobazam does not usually take effect so quickly. We'll see...