April 2003

Here we are on that warm Florida evening, about to enjoy Spaghetti and meatballs at Tony’s Restaurant, just like Lady and the Tramp. But soon after this happy moment, as Zoë describes it in her book, ‘…a subtle warm fuzzy feeling came over me and I felt light-headed, the blood rushing to my legs. Was I fainting or dying? What was this?‘

She must have been so scared, but she didn’t say anything. And not expecting her to have a seizure, we didn’t notice, because we weren’t looking for them as we learnt to do in later years. By then, she knew that she had TS (if you look closely, you can see her facial angiofibromas) so perhaps she was worried that it may be a seizure, but didn’t want to tell us in case it was true. Also, at that time, she wouldn’t have been able to remember those seizures that she had as a baby, so wouldn’t have had anything to compare it with.

As she says, these ‘fuzzy feelings’ continued at school and sometimes, when she read to me at bedtime. We had no idea. We thought that she had grown out of the infantile seizures she’d had when she used to go stiff and tremble a bit for a few seconds. Therefore, two years later, it was a great shock when she had a more serious one whilst her friend, Izzy, was at our house. It was the one and only time that her eyes rolled upwards and she lost the ability to speak. It was truly scary. She seemed to be awake, but couldn’t talk.

“You were just looking at us like a frightened animal unable to say anything, but your eyes looked so scared,” I told her afterwards. It was like that. Like when you talk to a dog and they listen to you, but they can’t talk back. However, interestingly, I did try to get her to sing by singing Twinkle Twinkle Little Star to her and she could manage that, although I don’t know how much she understood about what she was doing.

We phoned the TS Clinic at Bath who were absolutely wonderful and gave us an appointment the next day. They put her on Tegretol (Carbamazepine) which eventually, after removing her favourite pineapple and grapefruit drink from her diet because the enzymes in them broke down the medication, controlled her seizures for four years. She was able to come off it in 2008, and, to her relief, be seizure-free and medication-free for a while.