Pediatric Neurology: Trystyn's Story - Boys Town National Research Hospital
You know I remember telling the doctor, you know if it's at night time and he's seizing ninety percent of time, am I gonna wake up and my son's going to be gone, you know? I think that's when she decided to get aggressive.
I woke up and I heard gurgling sound which is very unusual from him out of his room, so I went in there and he was like not responsive. So I picked him up. I was trying I was patting him on the back I was like Trystyn, Trystyn you know wake up, wake up and I couldn't get any response out of him so I called 911.
When I first met Trystyn, there were several issues that were needing to be addressed. One was his underlying autism, but he was having a lot of behavioral regression and a lot of new behavioral changes. Autism is a very closely associated with epilepsy. There's a high risk of epilepsy in kids with autism. The challenging part is often times children with autism classically are, once they're diagnosed sort of lumped into a category and almost almost sort of ignored in a way. Oh he's being more aggressive, this is because he's autistic. Oh he's not learning as well, it's because he's autistic and that sort of seems to be the kind of pigeon hole that they're placed in, but the whole idea of seeing neurology for autism is to understand that there is a very complex brain mechanism in play and these children deserve a proper workup.
He was seizing 90 percent of his time. Of course he's not progressing in his milestones. Of course he's irritable and these were silent seizures, so these were seizures that people weren't seeing classically or were attributing to a movement that you see in autism. We embarked on a treatment plan for him that not only helped him with his autism, but also helped address these seizures and I'm so proud to say that we have now reduced his seizure frequency down to 20 percent of the time. Per mom, he's doing so much better. He is more alert, he is more agreeable, he is curious trying to learn new things and and it's fantastic. I feel so happy that I was part of that treatment plan. Working with Boys Town kind of gives me a sense of relief, like I know everything's gonna be okay. We've never done this before. We've never been through anything like this and then to have a child that's got three disorders one after the other in the first 11 years of his life, you know it was a little bit hard to take in and Boys Town they are very compassionate and caring.