• Post category:Infantile Spasms
  • Reading time:3 mins read

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This is from a post I made on May 11th: “As you know, we’re still dealing with James’ infantile spasms (IS). They don’t seem to be getting better. We’ve tried ACTH injections, which was supposed to be the best treatment for infantile spasms, but that didn’t work. There is another drug (vigabatrin) that is supposed to also be effective in treating infantile spasms, but we are really nervous about starting that one because of the possibility of permanent eye damage.”

We had started James on Clonazepam at the end of April to see if they would help his Infantile Spasms, but we noticed little, if any, change in the spams so Stacy put a call into the neurologist’s office on May 11th and they wanted to increase the dose. It’s been three weeks now since we increased the dose and we still haven’t seen much of a change in his spasms. It’s frustrating watching your kid have spasms/seizures and not be able to do anything about it. I think I am a little more understanding that most people, though. I was diagnosed with bipolar depression when I was 17, so I know it’s a little bit of trial and error trying to find the right meds, and the right dose to fix issues in the brain. You still feel so helpless, though.

Another call into the neurologist’s office and another dosage increase of Clonazepam. And now we wait to see if this increased dose works.