Wednesday, January 28, 2015

Jonah has recovered from his illness and with that has not been having as many seizures!! He had IVIG on Friday which has helped. The bottom line is though he is still having daily seizures. I wish they would just go away. He has still been having 2-8 seizures every day. 

We finally got the okay to wean Depakote! It will be an eight week wean to which we are in week three of. That's kinda why he's having more than usual seizures lately I think. 

I spoke with a ketogenic diet specialist that we will be hiring to help tweak the diet to hopefully make the diet more effective. She seemed to have quite a few ideas. 

Wednesday, January 14, 2015

Look who's 7


I can't believe James is 7. I wish I could slow down time. My babies are growing up way too fast. Sometimes is hard being the middle child but hopefully James knows that we love him just as much as we love all of our children. I hope you had a great birthday today, James. 

Tuesday, January 13, 2015

Again, I haven't posted in awhile. A lot has been going on actually in the last couple of days and weeks. 

In the last couple of days Jonah has taken a turn for the worse. His seizure activity has increased including some non convulsive status epilepticus which is basically a long seizure. The reason behind it I believe is illness. Ethan had been sick with a temperature and cold/cough. I think to some extent Jonah has picked it up which can cause increased seizure activity. I really hate seeing the long ones though. They are the same kind that he had back in June that put him in the hospital. Please be praying that they will not continue. 

Besides that he has been having increased seizures lately up to 5 per day. After IVIG he was seizure free for 5 days then he started gradually having them again including 2 tonic clonics(grand mals) in his sleep. Maybe because they are in a trail of extending IVIG to every three weeks vs every 2 weeks. 

I talked to his doctor which was really her nurse and she basically told me that we could wean Depakote, then increase ratio of fat if we want of his diet then if that doesn't do anything more to Benzel which is another line of seizure medications. Seems like that's what we talked about the last time we were in I don't know know why we are just carrying it out now. 

As far as IVIG she didn't say anything about changing that. Sometimes I wish I could have a conversation with his doctor and not just the nurse relaying the messages back and forth. We know it works great for the the first 4-5 days then he starts having seizures again.
 Not looking good here last night.
Last week smiles.