Well this summer was busy, fun, crazy and sometimes scary. Reese had gone almost 2 years seizure free and then at the beginning of July had two seizures in the same day. I had made the decision to hold off on medicating him when the seizures had seemed to resolve and his EEG and MRI came back normal. But when he had two in the same day and was fever-free, I followed the Neurologist’s suggestion and he was started on Lamictal. They start all children’s on low doses and increase them VERY SLOWLY, to avoid side-effects. We have not avoided those completely. I have found he is more active, more aggressive and has difficulty settling to nap. The neurologist wants us to wait it out before switching since all the anti-seizure medications have some negative behavioral or cognitive component to them. So we wait.
The visit to the Neurologist started a long search to find a Developmental Pediatrician that would take our insurance and see Reese before next summer. Luckily I have an appointment on 9/21/11 and hopefully will be able to schedule his multidisciplinary evaluation then. I have an IEP meeting at his school on 10/17/11 and unfortunately will not have results back before then. The testing hopefully will give everyone involved in his care the best information going forward with his services.
He is such a creative, intelligent and athletically inclined little guy. I just want him to have success in his school and social settings. I also want him safe and not confined or labelled because of his struggles. I know I am asking a lot.
