- You can feel it, when you’re right there. A quiet rumble at first, but within a blink of an eye, your world is shaking. It’s like time stands still, every second feels like a minute; and then, if you’re lucky, it stops. There are after shocks sometimes, not quite as severe, one little shake here and there. And then you can breathe. You have survived another seizure of your child.
There are many, many parents and people who deal with seizures every day, due to many reasons-epilepsy, TBI, fevers, illness. Rett syndrome sufferers are not the only ones, so I say this knowing there are millions of people around the world who must watch their loved ones go through this. It’s horrific, it never gets “easy”, but like so many things related to Rett syndrome it never really gets “easy”-it gets managed.
By the time Katie had her first seizure at around 3 years old, I was ready, HAHAHAHA. Whatever. I had been a Navy corpsman, I’d seen seizures, knew what to do, what not to do. I had asked for an EEG because I had read that Rett children start seizures around this age (since Katie was born before testing was available, her doctors didn’t believe she had Rett syndrome), her doctor was shocked that it came back positive. Within two weeks her first seizure struck. I don’t recall the day we got the test results like a lot of parents, but I remember her first seizure like it was yesterday.
We were at McDonald’s. My young son, Katie and I. She was in a high chair. I had just given her a bite of French fries, my son asked me a question, I answered and turned back to Katie. It was so silent, that first seizure. She hadn’t made a sound. Her head was thrown back and her arms and legs stiff and shaking at the same time. I grabbed the high chair so that it didn’t fall over. When it was over I grabbed her out, pulled my son away from his unfinished meal and WHAM seizure number two. I held her shaking body, felt it deep down in my soul, every spasm, every twitch-this body that hardly ever did anything at all was now in the throes of every muscle moving. And I thought I would die from the agony of her pain. Thankfully, that was it for about two weeks and then they hit again.
Now, she was officially no longer seizure free. We started her on Tegretol, with the warning….sometimes they get worse before they get controlled. I already understood the phrase “Status epilepticus,” knew it could be life threatening. What I didn’t realize is that my child would have it, and nothing really prepares you for that. I know now that we were lucky, that after 18 they stopped. I know now that some parents watch their children go through it for so much longer that I can’t imagine how their psyche survives it. But, for Katie and I out of all that darkness came a miracle moment, how and why I don’t know, and she being on some heavy medication, too; but she spent the ambulance ride going “ba, ba, ba BEE; ba, ba, ba BEAR” over and over. There I was scared to death I was going to lose her and she’s higher than a kite and talking. I didn’t hear the word “BEE” for almost another 20 years, during the Trofinetide trial, and I’ve not heard “BEAR” since.
Katie was hospitalized only once for seizures, put her two episodes of status epilepticus (18 one day, 16 another) had long term effects. She became temporarily paralyzed on her right side. And even though she hasn’t had a seizure in 17 years, her right side was never quite the same; it’s hard for people who aren’t trained to see it, but the difference is there. I am in awe of parents who go through it over and over and over and still face the day.
Katie’s seizures lasted 4 years. Why she stopped having them, I’ll never know. And like her first one, I remember her last one. She had a cold and her fever shot up from normal to 104 within a half an hour-seizure. She was lying on the couch; I gave her Tylenol and Motrin, cooled her off with a wash cloth, and that was it. She never had another one.
Still, her body remains bound by her brain in so many other ways. One day, one way or another, though, I believe she will be free.