Monday, January 23, 2012

Neurology Appointment...New Med Plan

We had a neurology appointment today and were pleased to see Dr. Aldohondo, the very first neurologist who saw Levi last year when we were rushed to the ER.  He was definitely at the top of our list of favorites.  He will be filling in for Dr. Chrusciel while she is out on maternity leave :)   Since starting Clobazam a little over a week ago, we haven't seen much difference in the seizure activity.  He is still having 30-40 a day, give or take.  It does seem to be lower today, but we spent most of the afternoon at the hospital, so I don't have a good count.  We saw Dr. Gibbons, the epilepsy expert.  He likes to set long term goals, and so scheduled a new med plan, which I'm very excited about.  He said at this point we don't really know what is keeping Levi from progressing, the seizures or the meds.  I certainly agree with that point!  So we are on a schedule to both increase Clobazam and decrease Phenobarbital every three weeks through Easter, unless there is a reason to stop (ie no more seizures or extra seizures, etc).  We were able to decrease the Phenobarb by 1ml tonight.  This is a long time coming.  We've been wanting to bring that down for a while now.  We have brought Topamax down to a level that we know is effectively helping the seizures, and are looking forward to doing the same with Phenobarb.  It is my hope that we can eventually wean him completely off.  It is the most sedating of the meds he takes.  It will still be several days before we may notice any difference in his behavior after decreasing Phenobarb because it remains in the system for a while, but I'm so much looking forward to a more alert baby!  I believe this will further his head control as well!

Currently Levi is taking: Phenobarbital 7mls once a day; Clobazam 5 mg once a day; Topamax 60 mg twice a day; Lamictal 4 mls in the am and 5 mls in the pm; Keppra 1.5 mls twice a day; and Nexium 10 mg twice a day.

Please keep Levi in your prayers, that we find a good med combination to both take away the seizures and allow him to be a more alert, happy little guy.  Also please pray for Dr. Chrusciel and her baby, for a safe delivery and a healthy baby!  Thank you :)

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