Today was the day I was supposed to go in there and get my kid off of Phenobarb.
I was somewhat successful.
If I'd gotten everything I wanted, I would have started to wean Charlie off of Phenobarb. IF we had seen seizures or concerning activity, then I wanted to start of something else--my first choice being Keppra.
Well, the Neurologist wasn't really having that. She said we could lower his current Phenobarb dose, or we could try a new drug all together. She wasn't really comfortable weaning him off and then playing wait and see with the seizures. Charlie's EEG is pretty ugly so I could see her point. One day I would like to pursue controlling things strictly with diet, but most anti-seizure diets involve cutting carbs and Charlie is currently in the throws of a serious crush on peanut butter and jelly sandwiches. I think this is a normal toddler thing--being obsessed with one particular food--and I'm hoping it doesn't last forever.
I didn't want to keep up the Phenobarb at all--the stuff is a barbiturate and I just don't think he needs to be taking it forever. Her next choice would be Lamactil, but I haven't heard anything about that drug so I countered with Keppra. She said Keppra was fine and wrote out a schedule for taking us off of Phenobarb and putting us on Keppra. I also asked her if she thought we should have some Diastat in case Charlie does have a big, bad seizure. She thought yes, but they don't make Diastat in doses small enough for him, so she gave us a prescription for Va1ium instead. Despite my family's jokes, the Va1ium is for Charlie--not me.
She also asked other Neurologist questions although at this point I do think she trusts me to take care of Charlie and doesn't probe for hours. She was pleased to hear that his vision is improving and also that he could get himself up twelve inch step. She warned me that we would have to stay vigilant about his eyes--his at an increased risk of lazy eye since his eyes don't always function as a single unit. She also reminded me that he needed to be standing every day.
I kept Charlie calm through the thirty-minute conversation with medical students and the twenty-minute conversation with the neurologist by letting him listen to the iPod. Everyone loves watching Charlie listen to his music--he smiles, coos, and sometimes even giggles if a particularly fabulous song comes on (this week Pitbull and New Kids on the Block are popular). At the end of the appointment, the neuro said I should tape him listening to his rap music and put it on Youtube. Little does she know this kid's entire life is on the interwebs.
Tomorrow we'll hopefully start the great Phenobarb wean of '09. I'll keep you posted.
