Epilepsy, Respite, and Travel

Just a diary entry

In November 2019, Ian fell out of his chair. He was there on the ground for just a second or two with his eyes were open. As I helped him get up, he was really confused about why he was on the floor.

That was his first visible seizure, but it didn’t last long or he didn’t shake, so his doctor wasn’t too worried. Maybe it was a one-off, she said.

We scheduled his first EEG after the holidays. They hooked up his head with a beanie cap of electrodes for thirty minutes. When the results came back normal, the doctor said that we should do a full weekend test just to be certain. She gave us a briefcase of equipment, a beanie cap of electrodes, and a portable video camera that had to be trained on his face the whole weekend.

On Monday morning, I unhooked him and returned all the equipment. Around 3:00 that afternoon, I got a call from the doctor’s office telling me to get down there as soon as possible.

I knew. As we walked down the hallway to her office, I said, “just tell me. He’s got it, right?” She said yes without looking me in the eye. When we got into her office, she handed me a box of tissues and I got a crash course on seizures.

She said that the EEG showed that Ian has invisible seizures every two minutes. Invisible seizures are bad, because any chaos in the brain is a bad thing. And invisible seizures, if uncontrolled, add up to big seizures. He needed to be on medication immediately.

He was probably having those invisible seizures for a while. We suspect that the head tic that he developed a couple of years ago was probably those mini-seizures. The head tics stopped when he began his epilepsy medicine.

I didn’t need that box of tissues in the doctor’s office that day. I didn’t cry then. I was on survival mom adrenaline. But also I was convinced that epilepsy wasn’t terrible. It was something that could be cured with a pill, while autism didn’t have a pill. So, not a big deal, right? Well, no.

Ian can’t tolerate the epilepsy meds. The first kind put him in the hospital for five days right before everything shutdown for covid. The second kind made him projectile vomit and irritable. The third kind, which he currently takes, also creates huge anxiety and near narcoleptic levels of sleepiness, but with less vomiting. We give him two other pills to counteract the side effects of his current epilepsy meds, but still needed to cut the dosage of his epilepsy meds in half.

In short, Ian’s medical needs, which hit him at age 19, now far outstripped his autism needs. He can’t be employed, if he needs a two hour nap in afternoon, can’t drive, and is in danger of hitting his head on a desk during a seizure.

The lurking danger of a serious seizure also means that we can’t ever leave him alone to go on a vacation, even for a short weekend.

We brought him with us on our vacation to Italy this year. He was mostly great, but Steve and I did have to make some adjustments to our plans to keep things Ian-friendly. He can’t walk around for as long as we can, so we had to go back to the hotel room for breaks. We stayed away from restaurants with exotic food, so he wouldn’t puke. And almost no 21-year old shares our love of really geeky museums, so we cut those trips short.

Frankly, we’re at the point in our lives, where we want to do some things by ourselves. We need a complete break from parenting/caretaking from time to time, and not have to make any compromises. If we want to spend five hours in an archeology museum or go to a loud club until one in the morning or just sit on a beach reading a book all day, then that’s what we need to do.

We decided that next year, we’ll take two vacations — an Ian-friendly vacation (he chose Cancun) and something just for us. And we need more time off on weekends. I called the state to get some help with these plans.

The state told some agencies to call me, but none of them were fabulous. They only want to work with the very disabled adults with big budgets for many hours per week. We need help a few weekends a year, so the agencies didn’t work out.

Instead, we’ll pay my older son and other family members for those respite weekends. The agencies were going to charge us $3,000 for one weekend. I’ll give that my money to Jonah or one of my nieces instead. If we take off for an entire week, then I’ll have to enlist the support of my entire family. Thank God that I have them.

I’m still hopeful that we’ll find a better medicine for Ian or that he’ll outgrow the seizures. But until that happens, we are getting by with trial and error, compromises, and support from family.