Praise the Lord! We have gone 15 days with out a tonic clonic seizure. Normally we see about 10 to 14 days in between the big seizures. So today was worth celebrating.
For those of you wondering, yes he still has drop seizures everyday. However they seem to be getting less severe. He will just drop his head now, instead of crashing to the floor. He is doing so much better than a few weeks ago! After dealing with this syndrome for over 10 months now, we know that all this can change in a matter of minutes. But we are focusing on right now, and right now he is doing well.
Today we made a trip into down town Seattle to see the ketogenic specialist. It was really quite uneventful. We decided to make a few changes to his meds, and also increase the MCT oil that he is taking. So now his medicine regiment looks like this:
Morning Meds:
625 mg of Depakote
750 mg of Keppra
330 mg of Carnitine
1/4 tsp. Baking Soda
10 grams of MCT oil
Lunch Meds:
1/4 tsp. Baking Soda
1 Flinstone Vitamin
1 Drop of 1000 IU Vitamin D
1/2 tsp. of Calcium Carbonate Powder
10 grams of MCT oil
3:30 Meds:
1/2 tsp. Calcium Carbonate Powder
10 grams MCT oil
Dinner Meds:
625 mg of Depakote
750 mg of Keppra
330 mg of Carnitine
1/4 tsp. Baking Soda
10 grams of MCT oil
The doctors were glad that he is having fewer drops. By increasing his meds and MCT oil they are hoping to see them all go away. Now it is just the waiting game all over again. :) Nothing happens quickly in the world of epilepsy. We are told over and over again, "Each child is different and so we just have to try things and see what works."
Ethan had a wonderful day and was very cooperative with the doctors. I am amazed at how smart he is! He has spent a lot time in hospitals so he knows the drill. Today the nurse asked him to take his shoes and helmet off so they could put him the scale. He said, "okay" then sat down took his helmet off, shoes and then socks....at this point I had to stop him because if it was up to him all of the clothes would have come off. :) He was very happy while in the office and even tried to get the doctor to read him a story.
Some things that you can pray for:
Wisdom in decision making
That Ethan will be completely seizure free
School for Isabelle and Isaiah
A smooth transition as we are adding medications
Thank you so much for your continued prayers!
Thank you so much for your continued prayers!
