Tuesday, April 10, 2012
Day 2 @ LeBonheur
Not a whole lot happened today. Austin is officially diagnosed with myoclonic tonic seizures. He is sleeping a whole lot so isn't having as many seizures as he has on a typical day. Still about 10 or more a day here. We are coming off of 1 of his meds because it actually doesn't have high success rate with his type of seizure. The other 2 he is on are great for what he has. They want to start depakote but some blood work is required first that takes a few weeks to get back. So we talked about adding a night dose of zonegran till we know if he can take that drug. For now they are testing blood levels for the meds he is on to see what needs to be increases or decreased with the other 2. We talked some about VNS (vagus nerve stimulator) but we are not there yet and it doesn't always work. That is something we will let Dr. O decide if he ever needs it. Today to biggest thing that happened is the Neurologist sat down with me and showed me a few of Austin's MRI's and CT scan. She showed me things I have never been shown before. Where his brain is damaged, the wider dips throughout the brain, the enlarged lobes. She also explained that these seizures that he is having does not cause or has anything caused more brain damage since the scans he had at 6 months old. For now, more EEG monitoring, coming off 1 med, possibly starting another or going up on the other two. May know more tomorrow. Austin did get out of the bed today. Went to the play room twice in his walker. Oh, the Dr also said we will probably be here at least 2 more days. :( I guess I was hoping for a miracle by wishing to be here 2 nights.