Infantile Spasms

Let me see if I can get through this. On July 25th Jacoby started having seizure like episodes. The first one, Bryan and I thought he was seeing for the first time. His eyes were moving together, which they never have done. Then he would have a falling sensation. After the second I called Dr. Edwards right away. On July 27th Dr. Edwards watched a video we had recorded of Jacoby and we started the process of trying to get him into a Ped's Neurologist. First available date was in November! No way we could wait that long!! By then he was having them 4-6 times a day in clusters of 10-20. It took Dr. Edwards calling the Neurologist to get him. So on Aug.8th we went to see Dr. McGlothlin at Cook's. After a short talk and watching the video's, he admitted us into Cook's Children Hospital within the hour.

Bryan and I had played doctor, done our research before we even went to the Neurologist. We thought it was Infantile Spasms before we even went in. So it didn't scare us, when we first found out. But shortly after, it started sinking in! All our research told us it could be a varity of things causing the spasms.





(Infantile Spasms or West Syndrome - is caused by something else. We won't just get rid of the seizures and it will all go away!) I can't even find a way to type the list of possibilities, because it still scares me to think about it and I'm working on letting God take control.

So while at the hospital they hooked him up to an EEG for 24hrs to read the brain waves. Followed by an MRI and lots of blood taken! If an MRI comes back with nothing, then your possibilites of whats causing the seizures is cut in half. So the good news/bad news nothing came back on the MRI. So now we wait 4-6 weeks for blood test results to come back.

How do they get the seizures to stop? In 60% of the cases they can get the seizures to stop with the drug - ACTH given in a shot form once a day for 6 weeks. (Worst thing a parent has to give these shots! Lucky Me!) This drug is only provided by one company in the world and is the only option avaliable in America.

We go back to the Neurologist Aug. 20th for another EEG, to see if ACTH is working.