Valentines Day Update

Happy Valentines Day everybody.

We saw Dawson's Neurologist today in Huntsville and let me start by saying she was very very very impressed with his progress. Even though he is continuing to have seizures, his progress developmentally, continues to amaze her. We feel blessed to have been led to such a wonderful Doctor. She spent the entire visit watching him and studying him. We are glad she not only is paying attention to the seizures, but his development as well.

This is what we learned today. There is a small window of opportunity to get the correct dosage in each child in order for the meds to work their best. Too much can cause harm ( as we have seen with the Vigabatrin) and too little will do nothing. Under the pretense that he is getting too much we are cutting his dosage of Vigabatrin in half. Also if you will remember, when we first got on the Keppra, we were dosing him at 1.5 ml. During that first week on that dosage he was seizure free. As we increased the Keppra his seizures increased. So we are going back to the original dosage of Keppra as well to see what that will do for him.

We will stay with this plan for a week,and then we are to call the Neuro to discuss with her what is happening. If at that time he is continuing to have seizures we will be heading down to Childrens Hospital in Birmingham to do what she calls " phase two testing"
This will consist of taking spinal fluid from him as well as blood. They will then use the fluid to take a very indepth lool at enzymes, DNA, ect, ect. It is way too complicated for me to explain what all they will be looking at, but she feels that it will give us a more clearer picture of why this is happening, and it will also help detail what meds he needs to stop the seizures.

Also she is setting up " Early Intervention" to contact us. This program will evaluate him and help with any developmental delays he might have in the future. To my knowledge this is standard procedure for any kid who has suffered from I.S. or other seizure disorder. The only thing Dr. Bebin saw today that bothered her was the fact that he doesn't use his left hand as much as he does his right hand. He can use his left hand, and does when he wants to, but alot of times he keeps his left fist clenched and the range of motion in his left arm is not near as good as it is in his right. Early Intervention will use physical and occupational therapy to address this we are told.

During our office visit today he had a small cluster of seizures and while he was having them he was smiling at the nurse the entire time!!! What a special little man!!

Also, I promised to post some video footage of the type of seizures he was having in the very beginning. I could not get mine to work but Dad had some footage that he gave us and we will post that tomorrow. Then we will post some of the video of seizures he is having now so you can see how much he has progressed.

Thanks for checking in and keep praying

Jeff and Allison