Category Archives: Epilepsy
Night seizures are elusive.
We know they are happening but knowing how often they occur and how severe they are is difficult to determine. We have some clues when one has happened but that doesn’t tell us the severity. The morning after a seizure he will be lethargic or cranky or a few other things. So in the morning it’s frequently a guessing game as to whether his attitude is due to a seizure, just being a six-year-old or something else entirely.
We have seen one or two, at least part of them. So far they don’t seem to last very long and the vast majority are when he’s asleep. The advantage of these types of seizures is that they are unlikely to happen at a time or place where he will injure himself. The disadvantage is that it is difficult to judge the effectiveness of his anti-seizure treatments. We also don’t know when/if they have changed (again).
If he has to have seizures this is probably a good kind to have. I feel for the parents of children with more difficult seizure types. No offense but I don’t want to join your group.
Any good film director or writer knows one thing. What you can’t see is much scarier than what you can. Our imaginations run wild and find the things that are scary to us that may not be scary to the next person.
Living with epilepsy could teach most directors a thing or two about that. It has plenty of unknowns to keep you kn your toes.
The most obvious are related to seizures. You never know when the next seizure is going to occur. Is it going to be when he’s safely sitting or laying down? Maybe. Or it may be when he’s crossing a busy street, what do you do then?
Even in our short time living with John Ross’ epilepsy and most of his seizures being when he’s asleep (more on that in another day) we have had scary moments too. Like the day he was swimming across the pool and just froze, mid stroke. He started to sink as my wife started to go towards him, calling his name. After a couple of seconds, which seemed an eternity, he continued as if nothing had happened. When asked afterwards he didn’t even know he had stopped. It’s called an Absence Seizure and typically is harmless, but not if you are swimming.
Another unknown is what will the next seizure be like? Will it be a relatively harmless one? Will it be like his others? Will it change into something worse? Will he start having tonic-clonic seizures (formerly known as grand-mal)? You never know with epilepsy as these things progress and change often.
Because of this there are things we can not let him do. He can’t ever swim without an adult. Can’t play football or soccer. Has to wear a helmet when biking or skateboarding (that one is always a good idea btw).
Because of the swimming thing, we can probably never let him learn how to surf. For most of the country this is probably easy and no big deal. We though, happen to live only minutes from Cocoa Beach Florida which boasts the best surfing on the east coast. You can be sure that all of his friends will be surfing as they get older and he won’t be able to join in.
Because of the unknown.
And that’s scary.
On March 20th of this year my oldest son, John Ross, collapsed at school. I was out of town on business and got the call from my wife as I was heading into the office. She was heading to the school to meet the ambulance.
This is every parents nightmare.
Over the course of the days and weeks that followed we came to learn that what happened was a seizure and that he has Epilepsy. His seizures have been increasing lately, mostly at night when he’s asleep. He’s on anti-seizure medication and is starting a special diet to try get things under control.
He’s still the same awesome kid he always was, now even more special.
I’ll post about our adventures through this over time. Some things are good (he gets to eat bacon, a LOT of bacon) others well, not so good. He is a trooper through it all. I wish I had half the strength and compassion he already shows at such a young age.