Life With Tics

I've backed up a bit to tell our story with our daughter's tics. You can read earlier posts about our journey here and here.

In February of 2007, our then 3 year old daughter was playing a game on the computer. She kept sort of shrugging her shoulders up and rolling her head back. Over and over. I finally decided that maybe her hair was bothering her. My poor baby has never had much hair, but at this point in time the back of her hair was finally growing out a bit in the back. I thought it might be tickling her neck.

"Is your hair bothering you?"

"Yeah."

So I somehow managed to get her hair into two tiny ponytails. How cute! I took a picture since it was probably the first time in her life she had enough hair for any kind of ponytail.

And then I forgot about the whole thing.

I'm really glad I took that photograph because it helped us know just how long this had been going on when we looked back at the date on the picture. In order to be diagnosed with Tourette's Syndrome, a person must have both motor and vocal tics for a period of at least one year. By the time we meet with the neurologist next month, Little Bit will meet that criteria. That's why I'll be really surprised if this is not Tourette's. But then again, I'm no neurologist.

After that (since we still really hadn't caught on) I couldn't tell you what she did until at least July. That's when S told me to watch how "nervous" she was and we visited our pediatrician. Since that time I have been keeping a journal of the tics that we see. Some of these are hard to explain:

raising her eyebrows, panting, licking her shoulders, coughing/clearing her throat, moving her head/neck, shrugging one shoulder up and down, facial movements, eye blinking, jerking head back/chin up, tucking her chin down to her chest, looking at her right arm, exhaling in a huff, repeatedly touching the person near her, and licking. Those are just the major ones. All of these stayed for a period of a few days to a few months. They come and go. They come back after being gone for months. She does several of them at once or just one. They get worse when she's tired, scared, stressed, or excited. She does something every day. Some days it's not really all that bad. Some days she just has to be exhausted at the end of the day from all the calories she has burned.

Sometimes the tics scare us. Like when she licked the laundry soap scoop before I could catch her. Or the open pair of scissors. Sometimes the tics are frustrating. Like when she cries before she goes to sleep that she "can't stop." Sometimes the tics hurt. Like when her fingers are sore from clenching them all day. Or when her throat hurts from tensing up her muscles all day. She complained about that one. "Mama, it hurts when I do this (demonstrated)." I told her she needed to stop. "But I need to do it." Those days break our hearts.

A diagnosis won't change our lives. Our life is already different. In a way the doctor's appointment won't really make that much difference. And it's kind of a big thing. But not really.

She's still our daughter. She's healthy. She's funny. She's smart. And we love her.