We learned he has around a 50% chance of developing Lenox-Gastaut Syndrome (LGS). LGS is a rare and severe form of childhood-onset epilepsy that is characterized by frequent seizures, multiple seizure types, a resistance to medication and/or therapies, behavior disturbances, and moderate to severe cognitive dysfunction. There was also a 50% chance that his infantile spasms would return once we stopped the steroids and that didn't happen so we are hopeful we won't develop any further problems and especially not LGS.
At this point everything is going well and we don't have to follow up in Iowa City any more unless he develops any other problems or has a new type of seizure.
Dr. Joshi is referring him to a pediatric stroke specialist in Indianapolis so we will hopefully be traveling there in the next few months. We want to make sure we aren't missing anything and don't need to be doing anything further for Ben to prevent another stroke. I should probably back up just a little and explain that Ben's stroke is unexplained. It is possible it occurred before he was born and could possibly have been the result of a small piece of placenta breaking off and traveling through the umbilical cord to his brain. But, that is just one theory and we really have no idea. There is also the possibility that he could have some type of clotting disorder though the hematologist that saw him in the NICU didn't think that was the case. Dr. Joshi isn't sure he shouldn't be on a daily aspirin regimen to help thin his blood and prevent further issues. So all this uncertainty is why we are seeing someone who specializes in pediatric stroke. Hopefully it will provide more answers.
Ben at lunch before his appointment. He looks pretty darn perfect to me!
