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!)
My next-door neighbor’s son is on the ketogenic diet. He has been on it for about 3 years now. They have had great success with it. He’s not 100% seizure free, but probably about 99%, and the ones he has occasionally now are very mild.
I know it was a hard transition for their family, but they have learned to live happily with it. They have 3 boys, and the one on the diet is the youngest, so it was hard to keep him away from other foods. They pretty much tell him, and everyone around him, that his food is his medicine, and he has to eat what they give him and nothing else. He is in first grade now, and does really well. He has been on it long enough that it’s just part of life for him and not something weird or bad.
I pray the best option for G will present itself to you guys, and to the doctors, and that whatever transitions you have will go smoothly.
That is exciting news about your neighbor…to have almost no seizures! It is going to be an adventure but we keep reminding ourselves it is what is best for our little guy.