Infantile Spasms

Infantile Spasms

Researchers Discover Source of Infant Epilepsy

Because James was diagnosed with infantile spasms, a type of epilepsy in infants, I found this news article interesting: https://www.adelaidenow.com.au/news/south-australia/researchers-discover-source-of-infant-epilepsy/news-story/ef954c883fc08ada20a590fbf4fa9928 Researchers at the University of South Australia found that a genetic mutation on chromosome 16 appears to be the cause of epilepsy in infants. They’ve known that the mutation responsible…

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January 21, 2012
Doctor Appointments / Infantile Spasms

Ear Infection and Doctor Appointments

It’s been a relatively quiet couple of weeks, medically speaking, which is why I didn’t post anything last weekend. Last Sunday, however, Stacy noticed a little bit of red discharge in James’ left ear. She called the pediatrician and he thought it sounded like an ear infection. He prescribed an…

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December 23, 2011
Read more about the article Chatting About Seizures
Infantile Spasms

Chatting About Seizures

“I am starting to get very pissed off at these stupid seizures!!! They have gotten worse and we have not done a single thing different!!! We are going to take him off the Keto diet next week and introduce a new med. I just want James to stop get frazzled...…

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October 22, 2011
Doctor Appointments / Infantile Spasms

Neuro Appointment & Diet Update

James went to see the neurologist on Thursday to check in to see how everything is going. Because James is still having frequent seizures/spasms, and the fact that James has lost so much weight, the neuro thinks we should take James off the ketogenic diet. Another failed treatment to get…

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October 15, 2011
Infantile Spasms

Please Stop These Damn Seizures!

As many of you know, James has been dealing with infantile spasms and seizures for almost two years now. Since James is non-verbal, we have no idea how he feels about them, but Stacy thinks that if he was able to tells us, he would say something like this: “I…

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September 24, 2011
Doctor Appointments / Infantile Spasms

Keto Diet Update

James went to see the neurologist overseeing his keto diet (aka “keto doc”) today for a check in and weight check on Tuesday. He is down three pounds since he started the diet. He started at 26 pounds; he is just a smidge over 23 pounds now. The keto doc…

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September 11, 2011
Read more about the article Minor Illness, AFOs, and Weight Loss
New Wrist Guards
Equipment / Illness / Infantile Spasms

Minor Illness, AFOs, and Weight Loss

James had a minor illness on the 31st, with a little bit of a fever, and some yellow “gunk” as Stacy calls it coming out of his nose. We gave him some Tylenol, kept up with the suctioning, and kept an eye on the fever. The next morning when he…

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August 7, 2011