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Friday, August 31, 2012

Painful Memories Best left forgotten

The photos below are just a couple examples of how terrible Kadyn's seizures used to be. 

I never want to go through this again. Kadyn's seizures used to be so bad he would seize and seize and seize and not amount of ativan would bring him out. He would need to be put in a medical induced sleep and put on a respirator. Seeing my son being intibated so many times put a fear in my heart every time he does have a seizure, but at the same time it has made me stronger, and wiser. When Kadyn was on Keppra, Lamictal, Zonegran, and Trileptol his seizures were winning. They were taking over his body, making him sleep all day and night. I don't know how many times I have rushed him to the ER thinking his shunt wasn't working because of how sick these medications were making him. Once on Ketogenic diet I noticed a huge difference. He started perking up more, being more active, learning new things. It's like this diet was healing his brain. I noticed his weekly grandmals went to once a month, and finally when we took him off the medication his seizures were gone. For a whole year Kadyn was seizure free. I noticed he was sick less, and he was happier. Kadyn took to this diet like a champ. He still has seizures, febrile seizures, or if something is going on like a virus or what not. These ones I can get him out of at home with Diastat. These ones are not as bad and don't take over his whole body. Those pictures above are just a reminder of how life used to be. Now things are looking up. Kadyn is in school, he is learning to hold his head up, and learning to use his muscles. He is learning to eat solids and he is mimicking more sounds and words. He is amazing. Just to think 2 years ago I never thought this would be possible. Now I am not going to bash seizure medication as I have seen it work for other children. Kadyn just can not handle it. Also I've been told by his Neurologist that if two medications fail the likely hood of a different one working is less than 20%. 

Today Kadyn still has a bit of a fever not as high though. 100.7. It is slowly coming down and staying down. Poor baby had some kind of virus run through his body. Tylenol is doing its job for him. His right side is a lot stronger today and I look for it to be completely healed by Sept 4th which is his first day of school. 

I am thankful now when Kadyn has  seizure he does not need a tube down his throat, just a little extra oxygen to help his breathing. 

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