Last night I was thinking about posting an update about Sebastian’s seizures and recent MRI. Then I read a short conversation between two people, one of which was actually making a joke about having seizures and I thought, well obviously they’ve never experienced a seizure, or seen someone they love experience a seizure. Or maybe they have, they describe it so well. Starting as a twitch. Then it escalates to a seizure. With a finale of a grand mal seizure. And I want to vomit. Instead I decided that now was the moment to write my update about something that means more to me that most can understand.
We are in a seizure cycle this week. It’s amazing how much these cycles break me down. I hate them. We can have a really good two to three weeks were Sebastian doesn’t have any seizures and then follows a week or two of having seizures every day. Every day. They start with twitches. Mainly in his right arm or leg. Sometimes the twitches are so big they are the entire right side of the body. Very quickly, suddenly and then they are gone. When the twitches start I have to monitor Sebastian because the twitches lead to bigger seizures. Usually after he falls asleep. He had one yesterday. He was so tired from school and finally fell asleep in the car on the way home. We sat in the driveway and I played with my smart phone while he slept. After about ten minutes I heard him moving and turned around to him having a seizure in his upper body and face. I quickly pulled him out of his car seat – thank God we were parked – and I held him upright until he woke up and came back to me.
When your child is having a seizure there is nothing you can do except wait it out. I hold him tight, sometimes upright or lay him on his side if he is already laying down. Sometimes he burps and soon snaps out of it. Sometimes he even smiles and I know he’s back after I’ve been saying his name over and over because there was nothing else I could do. Yesterday his seizure was only about a minute. Which is a good thing. Five minutes is bad. Anything over that and its a trip to the hospital.
Since Sebastian is now on two medications, Keppra and Volproic Acid, his seizures are more under control. I say more because he still has them. I thought that he would get on medicine and they would suddenly disappear. I mean, antibiotics make your sickness go away, right? Well, not so with seizures. It’s a gamble and usually a cocktail of medicines that do the trick. Unfortunately for us, the trick only helps most of the time, not all of the time. So we are on a cycle. I don’t know what triggers the cycle. I know that if we are in a cycle and Sebastian is over-tired then he is more likely to have seizures. This week and last he was even napping but still having his seizures. He takes MCT oil because someone told me their neurologist told them it would help with seizures. I don’t know if it does. But I do know it’s not hurting him. He also eats coconut oil because it is a healthy fat for seizures and gaining weight. But he still has seizures.
We met with our neurologist team last week. We have one resident and one doctor that we see at Sick Kids. It’s always the same resident and the doctor changes depending on the day. We went over the MRI Sebastian had back in January. His third one. Sebastian sat on my lap as we scrolled through the black and white pictures of his brain on the computer screen. There are white areas on the cerebellum. On the basil ganglia. Something about the grey and white matter. These are the places injured at birth. These are the places where the message is relayed. The place which creates the message for motor function in Sebastian’s brain is not white. It is ok. But the areas where the message is relayed are white. And they are not ok. So those messages don’t get to his arms or his legs or even his tongue, like yours and mine do. Which is why he has cerebral palsy.
Why did we need to be reminded of Sebastian’s brain injury? Because the doctors were looking for anything which may be causing the seizures since they started happening fairly recently (June 2010). They found nothing. A bit more white on the left side, which makes sense that most of his partial seizures are on his right side. His seizures are simply caused by his brain injury acquired at birth. So that’s that.
We are supposed to be happy and thankful that he doesn’t have them every day. And I feel happy and thankful for those weeks in the cycle when he doesn’t have them. Then I feel tired and defeated and sad during those weeks that he does.
So I apologize if I don’t join in on your dialogue about fake seizures. Because I know what the real ones are like. And they don’t go away with the laughter. Or when the conversation ends.