Kaitlyn's Korner: Seizure or not a seizure?

Tuesday, August 16, 2011

Seizure or not a seizure?

Kaitlyn had another episode today where her O2 dropped to 40! We are at the hospital to determine whether Kaitlyn is having seizures or whether it's her brain not telling her to breathe. In the ER she had an episode while the doctor in the room! It was good for the doctor to see it happen. They are going to give her an anti-seizure med today. She will be in the PICU overnight and then an EEG will be done tomorrow.

Please keep praying...

1 comment:

MeganAugust 17, 2011 at 10:43 AM
Hi! I'm a fellow Fieldstone Farmer, and just wanted to say I'm praying for your family. You have been on my heart and in my thoughts as I've been keeping up with your blog. Hoping you'll be home with some answers very soon.
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About Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease that affects metabolism and is caused by genetic mutations. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three types of Niemann-Pick Disease, Types A, B and C.

Kaitlyn had Niemann-Pick Disease, Type A, the most severe of the three types. She lacked an enzyme called acid sphingomyelinase. Since she didn't have this enzyme, her body couldn't get rid of sphingomyelin. Sphingomyelin has nowhere to go so it accumulated in her cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. There is currently no treatment or cure for the disease. When Kaitlyn was alive, she was 1 in 5 in the United States with Type A.