Last week, Stryder was admitted into the hospital to undergo a VEEG (Video EEG). Dr. Bell wanted to watch him on his current medication, once it was increased to the maximum amount. If Stryder did well, we would watch it and update in three months or if he shows any epileptic activity or regression in his language.
The morning after, Dr. Bell reviewed his EEG and there was little spikes!!! The news was great, but it is also temporary. LKS will have more relapses. Dr. Bell asked if I knew what the Valium would do, what I learned from reading and talking with other parents. Valium works great with some children and others it does not. The next step would be steroids, but he said he would want to consult with some other Dr’s prior to doing this because it’s dangerous and will cause the usual bloating.
We left the hospital that morning feeling okay. The Dr. did remind us that this is not over, we will have to have overnight EEG’s every few months because his are mostly silent. Stryder will have brain damage but because he has learned to use other parts of his brain, he will do better in some areas. It was sad and hard to listen to, knowing that this is the best he will be, he will slowly lose more language and have learning problems. We have an appointment on December 27th at Doernbechers Childrens Hospital and I hope to get more support.
Stryder is always happy though, smiling even through the horrible process of gluing nodes onto his scalp. The Dr. said he was the best 5 year old he has ever worked on. We hear that a lot, Stryder sure does show me the right way to deal with life.
This was his breakfast, he loved it!!!!
He got to leave in style with his choice of a wheel chair or wagon. He came in on a wheel chair so he chose to leave in the wagon:
Stryder had had a cough for a week now, and honestly I don’t know how long I should just wait, he has been sick almost every day for several months. Last night he was coughing and then had a seizure, shaking his entire body. I hope it stops, soon!