Today we had an appointment with the pediatric neurologist to discuss weaning the phenobarbitol my daughter takes for her seizures. We want her to be off the phenobarbitol because of the cognitive effects of the med, but at the same time I’m terrified because every time we’ve tried to wean her in the past she’s had break throughs or what they call status seizures, usually defined as 30 minutes or more of uninterrupted seizure activity . Meghan’s longest status episode was two and a half hours which is very dangerous. The neurologist would like to add Keppra, start to gradually increase the dose and if tollerated well, start to reduce the Phenobarbitol and hopefully get Meghan off the Pheno completely.
I’m not sure how I feel about all this but we’ve decided to give it a try, we’re going to start the Keppra during Spring Break. Please say a few prayers for my baby girl, I wish I could do all of this for her. My worst fear is that her seizures will re-surface and that she’ll have more set backs because of it. I want the best for her, I want her to do well and this is so hard. I love her with all my heart and if I could give my life so that she could be done with this I wouldn’t think twice about it.