This is a continuation of a post called The onset of Tourette Syndrome and my son . . ..
In earlier posts or from tweets on Twitter you may have already surmised that my son has Tourette Syndrome and some of the comorbid conditions that can go with it, such as OCD and ADHD. Below is a continuation of some basic information about Tourette Syndrome and a description of our experience with it.
Some tics are preceded by an urge or sensation in the affected muscle group. Some people with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge to tic or to decrease the sensation.
Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics. For example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished.
Tics come and go over time, varying in type, frequency, location, and severity. Motor tics generally precede the development of vocal tics and simple tics often precede complex tics.
Although the symptoms of TS are involuntary, some people can sometimes suppress their tics in an effort to minimize their impact on functioning. However, people with TS often report a substantial buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed.
After my son returned to school it was obvious that the events were triggered by anxiety. In school they were doing “rocket math” which were sets of timed tests to see how many addition and subtraction problems they could get done in one minute. The students each had a goal that they needed to accomplish, based on their specific writing speed, before they could go on to the next set. While my son worked with the tutor (which coincidently was his teacher) and I was observing, I noticed that just bringing out the green paper, which was used for these rocket math tests, would trigger a round of complex tics. I also noticed that his teacher exuded anxiety with her voice and how she interacted with my son. I could then see why he was having so much anxiety at school.
To help my son deal with his anxiety we worked with a specialist to identify coping skills that he could use. We also met with an integrated health doctor who was an expert of using vitamin and mineral supplements to treat Tourette Syndrome. In addition the integrated health clinic taught him biofeedback techniques. To be honest some of these things worked for a while, and eventually were not effective. The best techniques we found was distraction or music. When my son was going through a round of complex tics I could hand him a full glass of water and the tics subsided. It is as if the brain knew it had to carefully hold the glass of water to avoid spilling the water. For a brief time it would stop the tics. Overtime we also found that change of venue and music were the best items to use to reduce the duration of the complex tics. My son carries his iPod with him every day in case he needs it. Typically he has to use the iPod every day because his tics happened everyday.
In certain circumstances, such as public places, my son tries to suppress his tics, which is really hard to do and sometimes he is not successful of suppressing them. He also tells me that if he suppresses the tics eventually they have to happen, and when they do the intensity of them is increased.
Although the cause of TS is unknown, current research points to abnormalities in certain brain regions (including the basal ganglia, frontal lobes, and cortex), the circuits that interconnect these regions, and the neurotransmitters (dopamine, serotonin, and norepinephrine) responsible for communication among nerve cells. The genes associated with Tourette Syndrome have not been identified and there is no potential cure at this time.
Many with TS experience additional neurobehavioral problems including inattention; hyperactivity and impulsivity (attention deficit hyperactivity disorder—ADHD) and related problems with reading, writing, and arithmetic; and obsessive-compulsive symptoms such as intrusive thoughts/worries and repetitive behaviors. In addition, people with TS have also reported problems with depression or anxiety disorders.
There is no cure for Tourette’s and no medication that works universally for all individuals without significant adverse effects. The management of the symptoms of Tourette’s may include pharmacological, behavioral and psychological therapies. While pharmacological intervention is reserved for more severe symptoms, other treatments (such as supportive psychotherapy or cognitive behavioral therapy may help to avoid depression and social isolation, and to improve family support. Educating a patient, family, and surrounding community (such as friends, school, and church) is a key treatment strategy, and may be all that is required in mild cases.
A study of 46 subjects at 19 years of age found that the symptoms of 80% had minimum to mild impact on their overall functioning, and that the other 20% experienced at least a moderate impact on their overall functioning. The rare minority of severe cases can inhibit or prevent individuals from holding a job or having a fulfilling social life. In a follow-up study of thirty-one adults with Tourette’s, all patients completed high school, 52% finished at least two years of college, and 71% were full-time employed or were pursuing higher education.
My son is now in the sixth grade. There has not been a day that he has not had tics. Sometimes they are simply and sometimes more complex. Over a period of time they change slightly. He still has erratic body jerks and occasionally will include the loud vocalizations. About a two years ago we tried clonidine (also known ass catapres, which is a blood pressure medication), which had no affect on the tics, but did have side effects, such as lethargy. We ceased used it after about six months.
Recently, a new tic appeared where he either slaps himself in the face or punches himself. The situation is dire. My son has continued working with a neuropsychologist on coping skills and reduction of anxiety. We really have not had much success with this. The concept of doing things to prevent the tics from starting has not really been understood by my son. He is always looking for a solution to use as the tics are happening. Perhaps as he gets older the preventive tools may make more sense.
Dealing with the medical community is very frustrating. For many centuries TS was considered to be a psychogenic disorder. Now with more information, there is recognition of it being a neurological disorder. Yet there is still a belief that behavioral therapy can improve the situation. I find this concept idiotic. If you have spent some time with a person who has Tourette Syndrome, you would understand it is not behavioral and truly is involuntary. I guess the behavioral approach is to address the triggers that may cause tics to occur. Our neurologist, who is an excellent epilepsy doctor, has no expertise with TS, or at least does not feel comfortable treating it. Our psychotherapist has suggested that we work with someone to try some of the other medications that are available. So we are in the process of finding a specialist to work with my son. So far, no luck.
School has been a complete nightmare since this all started. Over the last three years he has increasing fallen further and further behind in school. The nature of his learning disabilities have become more apparent. I have also noticed that the type of teacher also has a huge impact.
I have had numerous discussion with teachers or the principal or the nurse, about the events being involuntary and not purposeful. They repeatedly kept saying, it appears he does this whenever there is work to be done. I told them perhaps the anxiety of the work was triggering them, and I pointed out the events do not always happen during school or while he is working on school assignments. They also happen on the playground. They happened while he plays video games. They have happened right before falling asleep. The principal of the grade school and I got into many, many heated discussion. I just wouldn’t give up.
In fourth grade he was assigned to a special education teacher. that lasted half a year, and she kind of threw up her hands, and complained that he could not follow directions or could not identify, by looking at the other kids in the room, what he should be doing. Now, she is a special education teacher! If anyone should know how to deal with this it should be her. In fifth grade they assigned my son to an individual, who originally was classified as a social worker, and suspiciously became his fulltime teacher for math, reading and language. This relationship went from good to terrible. Some of the things she did was unforgivable. She would punish him for having tics. She complained he was not getting his work done. She demanded that he continue working while he was having tics. She would not give him privacy when he was have complex and never-ending events. She was quite a *itch (I apologize for the language, but if there ever was a time to use that word, this is the time). By the time we hit fifth grade I begged my son to hang in there, because after that year we would be in a new school with different people, which should change the situation. At one point I did not think we were going to get through fifth grade.
Someone must have been looking out for us, because this year in sixth grade, the situation is completely different. My son’s teacher has worked with kids with Tourette Syndrome before. The school in general is trying to accommodate him at the same time that he is getting educated. He is in a class with kids with learning disabilities, and I think from a progress level he is ahead of most, if not all of the students. As a result of this, his self-image has improved. The biggest change is that the staff has empathy for the situation. My son now LOVES school, loves his teacher and is making tremendous progress. Next week is our IEP meeting. We will see how it goes.
* The majority of the facts in this blog were gathered from a variety of sources including the Tourette Syndrome Association