We’ve been home for 1 days. At 2 a.m. it will be 5 days seizure free. That will be the longest stretch we have had in weeks. The plan right now is for Chuck, Gabriel and I go to Children’s Mercy South on Saturday and meet with an Epileptologist (an neurologist who specialized in seizures disorders that are hard to treat). It will be to learn about an extremely regimented diet called the ketogentic diet and then check into the hospital for several days to begin the diet. http://www.epilepsy.com/epilepsy/treatment_Ketogenic_diet
Chuck had a gut instinct that this would the treatment Gabriel needed weeks ago. I was in denial and hopeful we could find something else for several reasons. 1. The diet will literally be life altering for all of us in many ways. 2. It doesn’t always work 3. If we had to do this diet it meant my baby was really sick with something super bad. But seems like here we are. I am totally willing to do whatever my kid needs. I NEVER want to see him how he was last week…it was awful. If the diet works for us it could mean Gabriel could be medicine free in a couple years.
I don’t know what the decision will be if the medicine he is on right now keeps working through Saturday. Today was great. He had plenty of energy (got sleepy around 11:30 instead of 1:00). His speech was understandable all day. He had a fun night hanging out with all of grandparents while I got to hit a consignment sale. We are hoping both of us get to go to school tomorrow 🙂
(Oops new blogger didn’t actually post this after I wrote it on Monday!)