Don't Know What's Going On

Rayleigh started Trileptal on April 14th. She then had 3 seizures over a 2 week period. A major improvement from the 3-5 per week she had been experiencing. Then, the first week of May she had 3 in one week. This past week she had one almost every day :( Yesterday she had 2. One at 6a and a second at 3:30p. Both about 20 minutes after falling asleep. Today she had one at 6:05a and a second one at 4:20p. I got the last one on video so we can show Dr. Coleman (her ped. neurologist) the changes. He may want to see if we can get an EEG to see if there are any changes in the brain where they are starting, etc.

Dr. Coleman is not the on-call doctor this weekend so we will be calling him first thing tomorrow morning.

There is a range of numbers they use when testing blood for medicine levels. When Rayleigh was on 4.5 ml a day her levels tested at the low in of the normal range. Last week when her seizure activity picked up we bumped the dose up to 5ml a day (spread into 3 doses a day). This hasn't improved anything.

We will see if we need to up the dose more or maybe try a different medicine combination with Trileptal. Right now she's on Clobazam & Trileptal. We may have just gone through a "honeymoon stage" and this might not be the medicine for her. Will post tomorrow after we hear from Dr. Coleman.