The Moving Target: Tourettes

Katherine's condition continued to change and some of the appointments we had been waiting for began to happen. In January, she had her EEG which only showed that their was no seizure activity during the EEG. In February, we finally got in to see a pediatric neurologist and we finally got a diagnosis. Katherine had developed Tourettes.

We were so glad to finally know what we were dealing with! But a Tourettes diagnosis was also very unwelcome news. It was yet one more poorly understood and incurable neurological condition to deal with.

The neurologist told us to research everything we could about Tourettes and then said to remember that it could all be different for a child with autism. He told us that Tourettes often gets worse up until around age 12. We couldn't believe it. Seriously! Could this really get even worse?! For the next 4.5 years?! And that Tourettes symptoms often improved during the teen years and sometimes disappeared by the early 20s. So at least we had that to hold on to!

We left that appointment without any prescriptions. Life was hard but we were managing, at least that's what we told ourselves. We were afraid of medication because Katherine would be unable to give us feedback on what effects she was experiencing so we were resolved to go without it as long as we could.

As spring arrived, things continued to get worse. We had learned how to manage better as a family. We were finding more balance between Katherine's needs and everyone else's needs but she was increasingly disabled. Her tics became more and more frequent and more and more intense. Her hands were covered with scratches from where she had raked the nails of one hand over the back of the other hand. She smashed one foot into the other foot as hard as she could so often that her feet were bright red all day every day. Her little face contorted and spasmed. She screamed at top volume and pitch such that her throat had to feel absolutely raw. Her own body was torturing her well over a hundred times a day.

In desperation, we called her neurologist and, after discussing the situation with him, decided to start her on guanfacine. Oddly enough, there are no medications developed to help Tourettes. All the medications used to reduce Tourettes symptoms were originally developed for some other purpose but have a side effect of reducing ticcing. Unfortunately tic reduction is not their only side-effect.

We started her on 1 mg on April 1st, increased her dose another 1 mg on April 27th, May 10th and the beginning of June. Guanfacine is a long-acting drug and it would take about 10 to 14 days for each change of dosage to stablize into it's final effect. With each new dose she would be super groggy for a few days and then as the grogginess decreased her ticcing would begin to decrease.  By day 4 or 5 she had over 90% reduction in tics. The results were so dramatic it was like she was a completely different child. She was so mentally present and interactive and joyful. It was like she had been released from prison, and in a very real way, she had been.

After a few days of freedom the ticcing and grogginess would start to creep back up. We had to increase her dose 3 more times throughout the spring and each time the pattern would repeat itself. So the entire spring was a roller coaster of grogginess and variable tic levels. By the time the final dose stabilized, we had about a 40% reduction in tics and a huge amount of grogginess. She was napping every day and it had been 4.5 years since she had napped. But a sleepy sissy was far better than a ticcing sissy for her and for us.