By Moira Giammatteo
Family Scholarship Program and Parent Mentor Program Manager
When you think that you have things under control that is when something hits the fan.
Five years ago we had three seizure events in our house. Vico had three grand mal seizures at age 11. One resulting in a nice scar on the back of his head where he fell. We went to the neurologist and also to our DAN/MAPS doctor to see what could be done.
Since there was no evidence of subclinical seizures happening on his EEG we decided to take a wait and see approach to medication. The DAN/MAPS doctor recommended upping the dosage on current supplements and adding in others. Who knows if that did the trick, but the seizures stopped.
So – time goes by, life gets crazy and soon I was up to my eyeballs in all sorts of family issues, a busy work schedule and trying to arrange a big trip to the UK. The supplement routine was spotty, I forgot to re-order things we ran out of and then I had a thought. If we were taking a vacation maybe we could make it a supplement vacation too. Why pack all that stuff? I could just bring a bottle of enzymes for possible cross contamination issues and call it a day. So – that’s what I did. 3 weeks later Vico had a grand mal seizure. His 13 year old sister came running into our den where Michael and I were watching TV and told us she thought Vico was having a seizure. We ran to his room and found him convulsing on the floor next to his bed. He had fallen on his face and split open his eyebrow (like a boxer) and I held him as Michael counted the seconds and the seizure subsided. He was a little out of it and we helped him into bed and got a compress for his eyebrow. He was able to talk to us, but didn’t realize that he had had a seizure. We explained that he had hurt himself and that Culzean had been the one to let us know he needed help. He must have seen the expression of worry on my face because he hugged me repeatedly and told me he was alright. Then he slept.
Next day he had a nice shiner under his eye, blood in the whites of his eye and his face was swollen. I thought he was slurring his speech at one point but then realized that he had bitten his tongue in the fall and it was swollen. So now – we are preparing to go on our trip and a bit freaked out. We figured, damn the torpedoes (or seizures) full speed ahead! If you are friends with me on FB you probably saw the embarrassingly high number of photos I posted from that trip. I have to tell you that we all went into that trip determined to have the best damned time any family has ever had. And we did.
So – now that we are back, we have another EEG under our belts and have scheduled follow up appointments with all the experts on our team.
Oh, by the way, you bet your butt I put Vico back on all the supplements the very next day after the seizure and packed an arsenal of them for our trip.
Stay tuned for more exciting adventures. Autism, the gift that keeps on giving.
Fore more information regarding seizures visit www.tacanow.org/family-resources/seizures
I adore team Vico and greatly appreciate sharing this important story.
For some families with autism, seizures start in the first 1-3 years of life, at the 6-8 year old range and at puberty. Families need to be diligent to request at a minimum 24 hour EEG’s to rule in or out this medical condition. Seizures change everything.
It is also important to note that seizures are treatable.