Epilepsy

I haven't written for weeks now because it is has been lots of processing. A few days after we were told that Chris had seizures and that we were to start him on meds, we returned to Yankton to have Matt eval'd for the same. He had an EEG done and I'm excited to report that it was normal. I'm pretty sure Mariclaire could hear me screaming from excitement at the elementary school!! The same day we were up for Matt's testing I spoke with Dr. Isburg about Chris. He stated that he was having moderate activity and his were generalized absence seizures. His carbatrol level would be checked in a couple of weeks nd then we would go from there. Then I posed lots of questions, how do we know he's having them, what do we do if he has one that is evident, will he grow out of it, will it get worse, will it effect him cognitively. I also asked if he was calling it Epilepsy and he said yes, but I have since learned that seizure activity and epilepsy can somewhat be interchangeable. The only thing he answered was that it is too early to tell if it will get worse or better and as far as cognitive, only time will tell. This last week was very rough. Chris was sick and while he was running fevers he had some seizures where he was tremoring with him and his eyes were rolled in the back of his head. Then one night I woke up to him with a mouth full of blood and a cut on his lip and one on the inside of his mouth. Not sure as to whether that was a seizure or him running into the side of the crib, but it was scary no matter which one it was. Since he's gotten better, they have seemed to go back to what they were before and in speaking with one of our physicians in town he questioned as to whether his threshold would be lessened since he already has seizures. That is on my list to talk to Dr. Isburg about this week as I have to find out if we need to tweek meds or not. On the 14th of March we visited with genetics and they looked him over high and low. Dr. Olney, the geneticist said he was too cute to have something wrong and I completely agree, unfortunately, something is off. After looking him over head to toe and taking pictures of him from head-to-toe the plan was made to do a few tests on him that would include a microarray which would see if he had extra genes or was missing something. They would also test for Fragile X, which I'm sure he doesn't have and Sotos syndrome. The category they are looking in is kind of like the gigantism category. They will also do a scan of his bones to check for his bone age to see if his bones are aging faster than they should. We don't know when we will do the genetic testing as they approve it through our insurance company before they do the testing. His swallowing is doing okay. When he was sick we had lots of aspiration problems and that is about the only time I wish I had the feeding tube option because he can't swallow effectively. We are looking at starting therapy this summer, however, with the epilepsy diagnosis on board we are not sure as to whether or not it is a possibility. He's cruising around everything and does descent walking holding someone's fingers but he really struggles with keeping his core engaged and therefore wobbles. I bought him new shoes the other day and he wanted NOTHING to do with them. He would stand, wouldn't move, he just sat there and cried. It was pretty darn cute. So, we have returned to status quo after our last illness and continue to get over the cough, but those can last for weeks. We head back to Omaha in a few weeks for a visit with PT and to see Dr. Prestridge.