Well, our journey began just after my daughter Ally’s 9th birthday in February 2009. It came in the form of an e-mail from her 3rd-grade teacher, who was writing to inform me that over the last few weeks my daughter had been making noises during class. Among them were animal sounds and adding sound effects to stories she had been reading to the class.
The “AH-HA” moment came though at the end of the e-mail when the teacher wrote, “It does not look like she realizes that she is even making the sounds.” It was that sentence that connected all the dots for me:
- Things I had been seeing over the past year.
- All of the sudden movements I would see her do while sitting on my lap that I kept asking her if she was cold.
- The funny movements I observed her doing with her arms while playing in the backyard.
With that simple sentence, the word “Tourette” flashed in my head. I had been raised by a father who was a drug company rep and a mother who was a nurse, so my knowledge of medicine was more than your average parent. That day, I called and made an appointment with her pediatrician.
We were lucky the day we went for the visit because Dr. Patel, who is head of pediatrics at our local hospital, was in and was the doctor who examined her. He turned to me after the exam and said, “You probably already know what I’m going to tell you as to what I think it is?” I just shook my head acknowledging that I, too, suspected Tourette.
He suggested we follow up with a neurologist and did us a BIG favor by calling a pediatric neurologist at the hospital and getting us an appointment right away. It was not until later when I had to find a new neurologist what a HUGE thing this was. So off we went to the neurologist.
The neurologist was very nice and diagnosed it as Tic Disorder with possible Tourette. She told us to be officially diagnosed as Tourette the “TICS” (a new word that now is a permanent word in my vocabulary) had to be present for a full year.
The neurologist had asked me for how long had I been seeing symptoms. Well, the animal noises had been since she was a toddler, which I thought had just been funny toddler behavior. Plus, she had always been a fidgety kid (just like her mother). The newer body movements had been present for about 6-8 months at that time.
The neurologist scheduled an EEG for her just to rule out seizures. Since the tics didn’t seem to bother her, we decided not to put her on medicine. Both Ally and I left that day OK with the possibility that she might have Tourette. Little did we know how much our lives were about to change.
I have one suggestion I will leave with parents that are just starting on their TS journey. If you are trying to get in to see a neurologist, seek the help of your primary-care doctor. As I found out later, if Dr. Patel hadn’t called the neurologist, we could have been waiting almost a year for an appointment. Talk to your pediatrician and see if he or she might be able to call and get you in sooner than calling on your own.
My next blog will be about our first journey in the world of public education and IEP/504s. That’s where I tell people our TS roller-coaster ride reached the top of the slow climb and we went plummeting down the first drop. So you will need to fasten your seat belts for that one.
Thank you both for the comments. I really was very reluctant about starting to blog. Writing has never come easy and caused me quite a bit of anxiety during my school years. Your comments prove that I can do this .
Wow, great post. I wish I had this forum when my son was diagnosed 6 years ago. I was freaked out. You’d have made me feel better for sure. Thank you so much.
G’day. I haven’t posted here in a long time. Not sure why. Maybe I was just starting to think it was dead. Why does no one ever put commentary on here? But I decided to take a peek anyway today and I found this great story. Cheers to you Susan. You’ve done right by your daughter. I hope it’s gotten at least a bit better as she’s aged.