Weaning..

A few months ago, in consultation with my son's neurologist and developmental pediatrician, we began weaning him off his anti-seizure medication (phenobarbital). For obvious reasons we were very nervous at the prospect of another seizure (tonic-clonic is his signature seizure). My mind often wanders to a slow motion replay of him convulsing, foaming at the mouth, turning blue and stopping breathing. My heart goes silent and it feels like I am witnessing him die, over and over again. Memory can be a terrible thing at times.

So why are we weaning him? Well despite trepidation we're anxious to see how being off the medication affects his development and behaviour (if at all). His last overnight EEG was crystal clear (though perhaps the phenobarb had something to do with that) which is comforting. Either way, we're now at the halfway point, down to 22.5mg/day, and so far there have been no ill effects. We're weaning very slowly, going down 7.5mg per month.

Of course whenever he's sick (like the horrific stomach flu/strep throat combo we all had last month), hungry or overtired, I'm on high alert for seizure activity. Much to my surprise and delight, he has had none. I suspect the true test will be when we enter flu and cold season this fall as he'll be fully weaned by then.

I wonder, do all kids with Creatine Transporter Deficiency have seizures? Is this just a little kid thing that he'll grow out of? Does the creatine/arginine/glycine treatment do anything to control the seizures? I don't know.