I am not only a mom of a young woman who has Tourette Syndrome, but I also have had TS for 35 years myself. I have to say, “Wow have we come a long way.!”
I’m going to start from the beginning. I am the oldest in a family of 2. My sister and I were typical girls, who had typical parents and led typical, ordinary lives. I went to a catholic school and was an average kid. I was a brownie, and loved arts and crafts. My grades were good, and life was, too.
Fourth grade started off normal. I can’t remember exactly when, but I do remember being in class and suddenly having the hiccups — a lot. At first, my teacher sent me out for water, but after a day or so, she had me sitting close to her desk and gave me the eye every time I had an “outburst.”
I tried really hard to keep quiet, but no matter what, I couldn’t. I was made fun of by the kids I had known all my life, and the school bus rides were torture. When we had to go to church with our class, my teacher would keep me close and hold my hand if I was having a tic. This didn’t help, but she seemed to understand that this wasn’t intentional. My tics, at this point were vocal — very vocal — and I was having full body spasms.
At some point, my mom was called in to have a meeting with the principle — a stern sister with a kind heart. Unfortunately, she didn’t know much about TS and took it upon herself to explain what she thought could be wrong with me — I might have a tumor or something seriously wrong with my brain and to seek help immediately, and that was it. This is where the ordeal really began, and my poor mom nearly lost her mind!
My mom took me to MGH (Massachusetts General Hospital), and the tests begun. I had every horrible test that has ever been designed to cause maximum discomfort to an already scared kid. I was kept awake for days to take a brain wave test for 20 minutes, beta wave tests, etc. I had spinal taps without novocaine — twice.
I am always shocked at how little the entire medical field really knows as a whole but not very surprised that the first line of defense is to throw numerous kinds of medicines at a patient to see what will happen.
I was only 9, and for the next couple of years, I was to be a human guinea pig. For each medicine given, another had to be given to counteract a side effect. This is a small list of only some of the meds that I can remember:
- Codine
- Clonidine
- Haldol
- Lecithin
- Dilantin
- Valium
- Cogentin
- Thorazine
- Various blood thinners
- Sleep meds
- Anxiety meds
They too numerous to name. Of course, my blood had to be monitored daily, which meant daily blood tests to check levels of medicines in my blood. When my arms and legs where black from bruising, they would take blood from my hands, legs and neck until those veins collapsed. I have an abnormal fear of needles because of this.
I am not a fan of any medication because of this. I don’t trust doctors because of this. Even though I was at the best hospital, seeing the best doctors, no one was able to make any type of diagnosis.
One night, when my mom couldn’t sleep, she was up very late watching a movie and a commercial came on — a commercial for Tourette. My mom went to the doctor and suggested looking into it. A week later a diagnoses was made.
From this point on, I needed to be in school, but they still had no idea what to do with me, so I was sent to Franciscan’s Childrens Hospital (formerly Kennedy Memorial Hospital). This place had a live-in day school.
I went from a normal kid with good grades to being placed in a class that was completely mixed. Some had behavioral problems, some were severely retarded, some had seizures hourly and did nothing but rock and mumble and wear helmets. We were all given the same schoolwork.
Often times, I was bored because I had done this work in kindergarten, but I was little, scared and didn’t possess the ability to voice my opinions. No one told me what had happened to me, and all I knew was that I was completely taken out of my environment, away from my family and forced to live in this place. I thought I was being punished and cried myself to sleep in that sterile environment almost every night for 2 years.
It was also here that I met the only doctor who would listen to me, at my young age, and really take me and my concerns seriously. He stayed with me until I was 21.
Dr. Joseph reminded me of a cross between Kenny Rodgers and Santa. He was serious but sweet. I remember once, sitting next to him, and he said, “You’ve had to grow up very fast.” I told him I didn’t want to take any more medicines and I wanted to go home. So I got to go home — for good. By the age of 12, I no longer took any medications. I have not had anything for my TS since then.
Yes we certainly have come a long way. I really can relate to this post. I grew up in the 60s, and sadly back then many thought tics could be beaten out of a child. I was abused both physically and verbally at home and school. I was not diagnosed until I was about 22 years old. I know that more needs to be done, but I am so happy that at least we have come this far.
Wow!!! Breaks my HEART
YOU STRONG SOUL!!