Neurology Update

Back in October, when we last went to the Neurology Clinic, there was talk about weaning Truitt off of the Phenobarbital. Phenobarbital was the very first seizure med that Truitt was given when he was one day old, and still to this day he has remained on the same dose he was on from the start, 6 ml's. Studies have shown that leaving kids on it for too long can affect their development, or alter their personality by way of causing hyper activity or drowsiness.


With all of the trouble Truitt had in 2009 with what we thought were seizures, we were all concerned about weaning him and felt it was safer to leave him on it for the time being. Last October, after we left the Clinic that day, Mary Karn (Nurse Practitioner) ordered a blood test to check the Phenobarbital levels in his blood. They said we would get the results in one to two weeks.


We got a call saying his levels were very low which was expected and also what we wanted to hear. But we never heard any news of weaning. Before I knew it months had gone by and we still hadn't heard anything. I was tempted to call a few times, but didn't want to push our luck. In my mind, a few months wouldn't hurt, it would allow him more time to out grow the dose a bit more.


Last week when we went back to the Neurology Clinic, Mary Karn decided to go ahead with the weaning process with high hopes that he will do just fine without it. He is currently on two other seizure medications that are a much higher dose. For now the plan is to drop 1 ml each month and the very last ml will be dropped by 1/4 ml every two weeks. Mary even warned me, that depending on he well he does, there is a slight chance that he may need that last little drop every other day for several weeks or months if he appears to be that dependent on it.


He will let us know the pace. We will set goals, and adjust those goals as his little brain pleases. We will watch for any signs that he is having withdrawal or breakthrough seizures and react accordingly. All we can do is hope and pray that his brain cooperates. I'm trying to remain optimistic, but it's scary. His body has been dependent on this med for his entire life. He has been doing so good, I hate to mess with a good thing.


Then again, some risks are worth taking for his future quality of life. If he is better off in the long run getting off of the Phenobarbital ASAP, then let's roll!