Seizure Suck.
I’m sure most people find it hard to grasp my spewing about Dane and his seizures. My life seems to be categorized with 2 groups of people. The ones that knew us when we lived in Seizure Hell and the ones that have known us for the last 6 years when things have been “easy” in comparison to Seizure Hell.
I’ll try and paint you a picture. Dane started having seizures when he was 10 months old. He had whacked his head & had a cold and within 24 hours he was having what would be his first of thousands of seizures. He was taken by ambulance to ICU at Tallahassee Memorial Hospital. I was 24 at the time. I was hysterical. Gary was off on a movie set somewhere. I remember the noise and the lights and the sheer panic of all the parents in the ICU dealing with trauma that seemed all too big for us to handle. The fear that takes hold when the neurologist told me if we didn’t get his seizures to stop he would become “statis epilepticus” which means he will NEVER stop! They loaded him with Dilantin, Phenobarbital and Valium. Still having seizures. Then they put him on Depakote - all the while telling me it could kill him - but “it’s our only option”. We take our chances. Dane is lying in a bed with electrodes all over him, an IV in his foot, and monitors everywhere.
On Day 9 the seizures finally stop. They send us home with Depakote and tell us to have his kidneys checked every 3 months.
Before the seizures I had this bright gorgeous little boy that was crawling and feeding himself and smiling and laughing. After the seizures all of that was lost. I was feeding him and carrying him and he didn’t laugh. The same toy that cracked him up 4 weeks ago didn’t do anything for him any more. Nothing did. I remember telling the doctor about it and he just looked at me like I was crazy. I knew I wasn’t.
As time went on some of the things he used to be able to do slowly returned and we went on with our lives Until the next episode, when he was cutting teeth and got a nasty sinus infection and here came the seizures again. They just kept coming. He is fully loaded on anti-epilepsy drugs and he is seizing thru them. I wrote every seizure down. I timed them and wrote descriptions of what they looked like. I had to do something while he was flopping around to feel useful. He would seize every hour of everyday for 4 days to 9 days or however long he was sick.
Just last week (he’s 18 years now) he had a 104 temperature for 48 hrs. and had seizures every 3 hours until his fever broke. Imagine the worst seizure you have ever watched on TV - that’s our lives. He needs 24 hr. supervision during this time. So, no time for showers, cooking or anything during that time. Some of you may think oh well at least he sleeps after them because that is what people with seizures do, right? Well in good Dane fashion of NOT doing ANYTHING the way it was written in the book, he does NOT sleep after his seizures. He gets anxious and starts walking in circles and babbling nonsense.
When he was seizing between 10 months to 13 years old I could pin him in the bed and cope. At 18 I cannot do anything. He is huge and strong. If he wants to get out of bed he will.
Seizure. Hell.