We still have about 3 weeks before we will see the full results from the increase of Clobazam that Dr. Hernandez has prescribed.
Dr. Coleman agrees with my husband and I that the Phenobarbital really contributing anymore to her seizure control so we're starting to wean her completely off of it. She is on 9ml each night right now and we will take it down 1ml a week until its gone. Dr. Coleman advised that her seizures could get slightly longer as we get her off the Phenobarb so let him know if they do and we might start weaning more quickly so she can start Trileptol.
That's the other big thing we discussed this meeting. Trileptol is used to control Partial Onset Seizures which is when the seizure activity begins or happens in one part of the brain. When Rayleigh had her 3-day EEG down at Cook Children's Hospital they concluded that Rayleigh's seizures begin in one lobe of her brain and spread after a few seconds to the whole brain. We haven't tried Trileptol earlier because the side effects are higher in infancy. So it's nice to know that there is still a medication out there that we haven't tried that might control the seizures fully. She continues to have 3-5 a week about 20 minutes into her nap.
If the Trileptol doesn't work after we get her on an appropriate dose we will begin the Ketogenic Diet at Cook Children's Hospital.
We see Dr. Coleman late in April so we will know by then if Clobazam is going to get them under control again by then. She will also be just about done with Phenobarb, I think we did the math and she will still have 2ml a night then. Coleman will go ahead and write the Trileptol prescription at the appt if the ClobazamPhenobarb down.
PS: Rayleigh Bug will be 1 year old 2 weeks from today!!!
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