This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Tuesday, April 20, 2010
What is this?
The day after getting out of the hospital we started noticing these "funny movements". After getting them on video and showing the doctors, the finally agreed that they were seizures. Jayen started having four to five episodes a day. We were constantly increasing his phenobarbital. He was so drugged up. It didn't even seem like his was the same little baby. We were worried mostly because it seemed he had regressed on some of the milestones he was meeting before. We told the nurse when we left the hospital that it seemed like he wasn't able to hold his head up as well as before. After two increases in the phenobarbital we added another medicine. Keppra was started on the first of April. The two medicines together seemed to help a little. By this point he was having two to three episodes a day. And on the 14th he was seizure free! But this wasn't a good turning point. The very next day his seizures starting occurring in clusters. He would start a seizure, come out of it, then immediately go into another one. This would occur five to ten times in one episode. This also prompted another increase in the pheno and the Keppra. The 16th was also a seizure free day, mainly because he was so drugged up that he couldn't even wake himself up. The medicines make him very sleepy.
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