We are 12 days into the depakote wean and he is doing well. To be honest he is a little better than well. He is talking and playing with his siblings. This makes my heart so happy.
The first 8 days (or so) after we decreased the medication we saw an increase in seizures. There was an increase in both number and intensity. I remember on one occasion (he did not have his helmet on) he had a drop seizure in his brother's room and put a big goose egg on his forehead. They were playing with legos and he was standing to close to the book shelves. Lots of ice and a few hours later he was ok. Although the goose egg was so big that his helmet didn't fit for awhile.
We see him get better after each decrease of medication. It just takes about 8-10 days for his body to adjust to the change. But after that time he is so much happier, and he has less seizures. The last two days have been wonderful. We have seen just a few slight jerks. (Insert big smiles here) In this roller coaster of seizures we know that his body will slightly increase seizure activity again soon. Then it is time to drop the medication again. It is almost as if his body is saying, "This stuff is making me sick." But we can't take it all away at once or he will have bigger problems. Believe me I wish we could.
Also we have consulted another specialist on the ketogenic diet and she has recommended adding several supplements to Ethan's diet. So far we have added fish oil, and COQ10. He cracks me up because he will just take the pills and chew them up. ewww!! The other kids laugh, which makes him want to do it even more. He doesn't know how to swallow pills yet and I was concerned about how I was going to get him to take them. They are oil gel caps, much like vitamin e. Tonight we will add folinic acid to the list of supplements.
It has been really nice to have a few restful days.
Much prayer would be appreciated for the next couple of days. After church today we caught him in his room with Isabelle's tootsie pop she brought home from her class. I was a little surprised. He doesn't really ask for food from anyone because he knows that he can't have it. However, as he has been coming off of the medications he has become more and more alert. He is not so "zombie like," anymore. He is now aware that he is missing out on things. We are all praying that his ketones stay high through the night and that he doesn't have a grand mal from the sugar.
One day, one step, one moment at a time.
Thank you again for your prayers.
No seizures in the night and his ketones remained high!! Praise the Lord. Today he attended his preschool class and the teachers were shocked that he didn't have a single seizure in class!! So excited! They usually see to many absence seizures to even count them all, and about 6-10 drops (where he actually hits the ground) in the two hours that he is there. We are hopeful that God is answering prayers! Thank you all so much for praying.