Lizzie has been completely off of the Trileptal for 6 days now with no seizures.  This makes me think the low sodium levels she was having, caused by the Trileptal, were the trigger of her seizures last year.  She is still taking the Phenobarbital, Keppra, and Topamax.  Hopefully the Topamax, our newest addition, is doing to job.  We are following up with Lizzie’s neurologist in July, and I am hoping that she will talk to me again about weaning the Phenobarbital.  Every time in our past that we have weaned the Phenobarb, Lizzie has gained skills shortly after.  Actually, the very first time we weaned the Phenobarb, Lizzie sat up within a month, she was almost 3-years-old.  The other weans were followed by: getting on all fours, crawling, pulling to a tall kneel, pulling to stand, and her first words (“Ah-duh” (all done)).  This leads me to believe that the Phenobarb is directly linked to her developmental delays.  I don’t believe this is the entire cause of her delays, but I also don’t rule out the possibility that this medication is holding her back.  My ultimate goal is to get her off of the Phenobarb.  When we’ve weaned in the past, she only gets 2-4 ml less before we have to stop or increase again, because she has a seizure.  However, we haven’t seen any seizures in 6 months, and we haven’t increased the Phenobarb in a year or two, so she may be outgrowing its dosage.  I hope at this time we will be able to successfully wean the Phenobarb completely.  I also hope Lizzie’s neurologist agrees that it’s worth a chance.  I would love if the reduction of Phenobarb lead to Lizzie discovering more wonderful words.  I can’t wait to ask.  🙂

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