Today we went to Huntsville for Dawson's EEG. First let me tell you that the lady who hooked him up for the EEG was just awesome. What has taken others 40 min with past EEG's ,she had done in about 5 minutes. She was very fast and we were very impressed with her. Shortly after being hooked up Dawson went on to sleep so the whole process took less than an hour.
After the EEG we had an appointment with his Neurologist. She said his EEG looked good. There was some seizure activity picked up on the EEG during sleep but the Hyppsarethmias (sp) are still gone. We were hoping that when he woke up from his EEG we could capture some of the actual seizures on the EEG and wouldn't you know it, the little stinker has gone all day with no seizures. We are glad of course, but it would have still been nice to see what they looked like on the EEG.
We also talked about going to Atlanta for more testing. She tells us that we have pretty much ruled out about 95 % of what could be causing these seizures. The Doctor in Atlanta would dive very deeply into the remaining 5 %. He is a Metabolic Specialist and she highly recommends that we go see him. They would probably take more spinal fluid as well as do a muscle biopsy on him.
Needless to say it has been a busy day and we are still trying to process all the new info. We are also starting the drug Lamictal. I would love to hear comments on anybody who has tried this before and what it did for them?? Side effects??
Pray for us as we have a lot of decisions to make in the very near future. We love you
Jeff and Allison
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3 comments:
I think all in all, great news! It's that dreaded hypsarrythmia activity that we fear so much.I don't have any first hand information on that particular medication however a friend of a friend has a daughter that became seizure free, finally, on it. That's all I've got, sorry. Hope you had a nice trip. A change of scenery always helps ones mental state I think.
Take care, Heather
Hi, I have been on lamictal (and still are)for straight forward grand mal and petite mal Epilepsy that came on as a teenager. Side effects for me are - mood stabiliser (things don't worry you so much), very small weight loss. My son had Infantile Spasms, but he was never treated with Lamictal. It is very benign compared to the other IS drugs (in my very humble opinion). I hope it works.
Well, the news you have received isn't bad news. Even though it is a hard situation, things could be so much worse for you guys. I know that God will take care of Dawson and he's already doing so. I am sure it's going to be hard to see him go through anymore testing, but it could help with ending the seizures all together, right? You do have a very hard decision to make and I couldn't tell you what I think the best choice is. I'm sure no one knows until they have been in your shoes. I pray for you guys and love you very much!
Rudy
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