Tourette – What It Is
Since the age of 5, my middle son developed this devastating neurological disorder. I had always thought he was a rambunctious child. During a visit at my parents’ we were watching the “Wizard of Oz”, my son twitch uncontrollably and disrupting the movie with loud, strange noises. My dad said “You better have that kid checked out”. I thought this may have been stress from the divorce proceedings. The next day I called our pediatrician and made an appointment. The exam revealed no abnormalities physically and I was referred to a neurologist. The neurologist scheduled an EEG and confirmed the diagnosis. Tourette Syndrome (TS) more prevalent in boys and develops between the ages of 5 and 7.
So what is Tourette? According to the Tourette Association of America, quote:
“Tourette Syndrome is one type of Tic Disorder. Tics are involuntary, repetitive movements and vocalizations. They are the defining feature of a group of childhood-onset, neurodevelopmental conditions known collectively as Tic Disorders and individually as Tourette Syndrome, Chronic Tic Disorder (Motor or Vocal Type), and Provisional Tic Disorder. The three Tic Disorders are distinguished by the types of tics present (motor, vocal/ phonic, or both) and by the length of time that the tics have been present.” (Emphasis Added)
My son had motor, vocal. Tics would last a minute, some only seconds. He had no control whatever, it was like mini seizures multiple times a day and new tics would develop every day. The motor tics were the worst, the inability to hold a pencil, grunting, kicking, whooping and shouting. The verbal tics were socially inappropriate and consisted of swear words or racial slurs. (Racial slurs came much later.) Tourette was very rare when my son was diagnosed (he’s now 38). He created such a disturbance in the classroom, he was made to stand in the hall at a desk by himself. They thought he was being disruptive on purpose. In 2010, 1 out of every 160 children between the ages of 5 – 17 diagnosed, and has since risen to 1% between the ages of 5 – 17.
TS is hereditary. Environmental and developmental factors contribute to the onset of TS, however, to date no one has identified the gene responsible. There is not a lot of research and there is no “cure”. There are also “co-occurring conditions” outlined below:
- Attention Deficit Hyperactivity Disorder (ADHD) — Problems with concentration, hyperactivity, and impulse control.
- Obsessive-Compulsive Disorder [or Behaviors] (OCD/OCB) — Repetitive, unwanted or intrusive thoughts and/or repetitive behaviors. There are many types of obsessive thoughts or urges, including excessive concerns about doing something “just right,” as well as intrusive religious, sexual, or aggressive thoughts. These thoughts lead to compulsions, which are unwanted behaviors that the individual feels he/she must perform over and over or in a certain way.
- Learning difficulties — Difficulties related to reading, writing (dysgraphia), mathematics, Executive Function Challenges, and/or processing information that are not related to general intelligence.
- Behavior problems — Aggression, rage, oppositional defiance or socially inappropriate acts (disinhibition).
- Anxiety — Excessive worries or fearfulness, including excessive shyness and separation anxiety.
- Mood problems — Periods of depression or elevated mood that result in a change in behavior or functioning, which may be significantly different from the child’s usual self.
- Social skills deficits and social functioning — Trouble developing social skills; maintaining social relationships with peers, family members, and other individuals; and acting in an age-appropriate manner.
- Sleeping problems — Difficulty falling or staying asleep, bedwetting, walking or talking while asleep. 1
My son had ADHD and OCD concurrent with the TS diagnosis. Family life as we knew it vanished and was replaced with a barrage of visits to different doctors in an effort to find something that would control the TS symptoms so my son could function in school and at home. The video below discusses the impulse control and anger (15 minutes in length) which I hope will be helpful if you have a loved one diagnosed with TS. 2
Medications and Treatment
Being a single mother is tough enough without the added stress of dealing with the diagnosis of TS in a 5-year-old. I was a single working mother attempting to create a stable home environment for my children, and that included all the extracurricular activities; football, basketball, cheer leading, dance and gymnastics. After numerous doctor appointments and research, we decided we should try medication to control the tics, which included Haloperidol, pimozide, and aripiprazole (Currently approved by the FDA but has unwanted side affects) and guanfacine or clonidine (used to control blood pressure). Also, Oxycodone, Oxycontin. My son became lethargic, angry and frustrated. He became suicidal at the age of 10. He was stereotyped and ostracized and put in a “learning disabled” class room. He tried so hard to control the tics but the more he tried to control them the worse they became which added to the frustration and anger.
He soon became a very angry and self-destructive teenager. All the medications had taken their toll on his body and his brain. At the age of 14 he resorted to drugs and alcohol to control the tics and fell in with a bad group. I was frustrated and I felt helpless, the drugs were destroying my son. When he turned 16 he told me he didn’t want to take the medications anymore. One medication oftentimes did not control the tics, so there was always one or two more that “we would try” which did not help. The side affects were worse than the tics. So together we decided to forego the medications and the tics are what they are, instead educating the schools and teachers.
My son was already on a destructive path and after we discontinued the medications, he continued to drink and smoke marijuana. He said it helped with the tics. This is not the life I envisioned for my son, it hurt to see the self-destructive behavior evolving in his young adult life. It just didn’t seem fair. How could I help? Where do I turn? Who do I talk to?
At the age of 21 the tics were so bad and lasting so long we had to wait until they passed until he could speak. Speaking to him during a tic only irritated him more. We decided we would try another neurologist. Surely by this time they had come up with a medication that could help. So we tried yet another medication. The doctor said that it would take a couple of weeks for relief. I kept a close eye on him, waiting for any adverse reaction.
The next part isn’t pretty. I can remember asking the pharmacist about adverse reactions. There were none that I should be concerned about, except that if it doesn’t feel better in two weeks to notify the doctor, and if I should notice anything unusual, notify the doctor. (I can do that). I try to block this part out, but I want to share with other families and parents so they are informed enough to see the signs and avoid disastrous consequences.
It was two weeks to the date my son said to me, “I feel really strange”. I asked “How?” He couldn’t describe it. I said, “Okay.” I will call the doctor and let him know and see what he wants us to do.” I was working long hours as a court reporter in Florida at the time, sometimes I didn’t arrive home until very late in the evening. That day happened to be one. My son was unusually sullen that evening. He smelled like alcohol, so I knew he had been drinking. He was sitting at his computer (I can’t remember doing what). He had Phil Collins playing “One More Night”, I remember as clear as day. My daughter was in her room writing in her journal and I went into my room to work on a transcript that had been ordered that day.
I had been in my room a matter of minutes and heard a sound I will never forget. In my heart, I knew what had just happened. The rest is a blur of ambulances, helicopters and disbelief. My son had shot himself, the bullet went through the roof of the mouth and through the frontal lobe of the brain.
The Good News
If there is any good news from a devastating event such as this, he lived. Apparently, the universe has decided he has more to do in this life. It took approximately 5 years of rehabilitation, but he’s doing very well at the age of 38. How did he survive? And why? The why is he wanted to blow the disease out of his head, he wanted it gone. He hated the tics, they hurt. His whole body hurt. He survived because he used a bullet, not a hollow point, and it sliced through his brain like a surgical knife. He has a metal plate to fill the hole, and has had many plastic surgeries to replace the roof of his mouth. As a result, he now suffers from Grand Mal seizures, However, the TS symptoms were almost gone! We found a great neurologist in Florida who was able to find the proper dosage of mediation to control the seizures and he’s been seizure free for almost 8 years and the TS greatly minimized since the date of injury.
His neurologist explained to us as best he could. The region of the brain that was destroyed “housed” the neurons for the TS symptoms. Once that was destroyed, the nerves severed, the symptoms were gone. The brain is amazing, when one part dies, it remaps and redirects carving new pathways! My son’s brain was remapping which is why he is high functioning. If you were to meet him at a store or shopping, you wouldn’t know the extent of his injuries. His neurologist asked to perform a case study for publication. My son is hopeful that it will help other young adults who suffer from TS.
My son lives with me, and gone is the frustration and anger, replaced with contentment and joy that he survived. Did he really want to die? No, he just didn’t want to tic any longer. He wanted the symptoms gone. It’s been a long 15 years and he has made great strides. Our family has been affected in many different ways; anger, disbelief, horror, grief and not understanding. Everybody deals in their own way. I respect that. I’m happy for my son because he no longer suffers from the tics, but I’m sad because my dreams of what could have been are gone. I don’t think a parent ever recovers from the feeling of guilt for not being able to do more for a child. When I do think about that night, I always ask myself “what did I miss?” Maybe he was destined to survive so his story would reach out and touch someone else suffering from this misunderstood disease.
My hope is this article reaches parents and children, when you see someone who can’t control their actions or words, maybe they have this disease. Please be kind and understanding. They are aware of what they are doing, but are helpless to stop it. And they want to stop. We need to educate the educators and doctors, the general public to have compassion. It doesn’t matter whose genes are the culprit, it matters how loved ones handle the symptoms. Know where to get help and discuss before jumping into one treatment to another. It’s best to research the treatments.
There are new treatments available such as “vagal nerve stimulation” (NCBI) in some cases are helpful. The is a fairly new procedure used to treat tics. See a doctor that specializes in TS it makes a difference in the quality of care. Reach out to the Tourette Association of American and other parents. You will find that you are not alone.
1 Courtesy of Tourette Association of America, Inc.
2 Tourette Association of America, Inc.