Tourette’s Syndrome, 9 year old boy
January 16, 1994
I would like to give you some insight into the pain, frustration and desperation felt by the parents of a child out of control.
Jason’s problems became apparent at the age of 2 1/2. I enrolled him in a little play school program at the Community Center for 40 minutes a day, two times a week. After about three weeks in this program the teacher came to me and said, “You need to use very strict discipline with Jason. He is totally out of control in class.” She recommended a book on parenting with the philosophy of ‘spank him for every offense until the child is under control and submissive to your authority.’ I tried this for about four weeks. Jason would break a rule; I would spank him. He would put a whole package of toilet paper in the toilet; I would spank him. He took permanent ink Magic Markers and use them on every appliance in our house; I spanked him. Our home was a battlefield.
I decided to look for more effective ways to deal with my son. Jason is an only child so I didn’t know if these were normal problems faced by every parent. I began to study child development, parenting, discipline techniques and esteem building so I could develop the skill necessary to work with my son. I read books. I attended classes and seminars. My son’s behavior at home improved but in any social situation he again went out of control.
At the age of five, Jason was attending preschool at the Child Development Center of a local Community College. In their evaluation they wrote: “A bright child, totally bored by classroom activities. Extremely sensitive to criticism or rejection. Makes funny faces and noises to get attention. Will not comply with rules. Ignores the staff. Tests limits with every adult. Inattentive, aggressive, disruptive, destructive, a loner, doesn’t interact with his peers. Orders other children around. Uses foul language. Says things to intentionally hurt other children. Abusive to the school’s animals. Other children have learned to avoid him. Parents do not want their children to play with Jason.”
Once, when Jason had broken a rule at the Center, a teacher corrected him. Jason said, “You don’t make the rules about me, my mother makes the rules about me.” The teacher said, “When you are in school, I do make the rules for you.” Jason straightened himself up, put his hands on his hips, and arrogantly replied, “Then I’ll find another school.” Jason was kicked out of this school and I had to try and find a preschool willing to enroll him.
I found a school willing to enroll Jason, a Montessori Academy with a very structured program, small classes and strict discipline. In their report they wrote, “A very disturbed child, devious and destructive. We have to watch him constantly to be sure he doesn’t hurt another child or destroy property. He delights in negative behavior and vulgar language. Disrupts the classroom with squealing sounds. Will not accept direction or discipline. Always on guard, observing everything and everyone around him. Always touching everything and bothering other students. Cannot function in a classroom of 18 children and 2 adults.”
Because of these problems I took Jason to a pediatrician specializing in behavior problems. He referred my to a psychologist who ran a full battery of nine tests. In her report she wrote, “During the testing Jason refused to follow instructions and said, ‘I’m going to do it MY way. Then he deliberately did the opposite to the test instructions. He asked for a break, then refused to come out of the bathroom for over ten minutes.'”
In spite of these behaviors, he obtained a full scale IQ of 124 on the Weschler Preschool and Primary Scale of Intelligence Test. On the Wide Range Achievement Test he rated: Reading – 4.4 grade level; Spelling – 2.9 grade level; Math – 2.3 grade level. This testing was done before Jason was enrolled in an academic program of any kind.
Based on these findings the psychologist concluded that Jason did NOT have attention deficit disorder, or a learning disability, or a medical problem of any kind. She referred us for short-term psychotherapy with a psychiatric social worker, hourly sessions once a week. In therapy we were told that if we were better parents this wouldn’t be happening. We were too strict; he was rebelling against the teachers because he was afraid of us. We were too lax; he was spoiled and expected his own way with everyone. His school placement was wrong; he was bored and unchallenged. We were expecting too much of him; this was causing him stress and depression. “He’s just a little boy.” If our marital relationship was sound, he wouldn’t be so insecure.
If this therapist had been familiar with the behaviors associated with Tourette Syndrome, if she had been up-to-date on treatments which are effective, if she had been willing to listen to us without making assumptions or jumping to conclusions, if she would have listened to the staff at Jason’s school, her therapy could have been so helpful to our family. As it was, her therapy did more damage than good. We were thoroughly confused and didn’t know where to go next for help.
In the meantime, I would receive up to six calls a day from the school. The school director was being pressured by teachers and parents to expel my son. He was spending most of his ten hour day in her 8′ x 10’ office with her. She did this out of compassion for me so I could continue to work. We had no support system. Our friends didn’t want us around. The neighbors didn’t want us around. For a period of ten weeks we couldn’t even attend church in case Jason would scream out an obscenity or hurt someone. We had no idea what resources were available to us because the so-called professionals denied that my son had a problem. I again began to educate myself. I was often up until two or three in the morning reading everything I could find on attention deficit disorder, seizure disorders, autism, dyslexia, schizophrenia, and many more I can’t even remember now. I studied the brain and how it works. I studied classroom and institutional management of children whose behaviors are out of control.
At this point, a friend suggested that I talk to our public school district’s psychologist. I called him and briefly described Jason’s behavior. He said, “That sounds like Tourette’s Syndrome. We see it all the time. You need to go to City of Hope.” In a five minute conversation he identified what doctor after doctor had missed over a period of nine months. I took my son to City of Hope and he was diagnosed with Tourette Syndrome with attention deficit disorder. My son started taking medication in June, 1987.
The first day he was on medication I again received about six calls at work, but this time it was all good news. The director of the school said it was the most dramatic change she had ever seen. he was cooperative, productive, able to follow directions and stay on task. For the first time he had fine motor control. He could cut with scissors and color inside the lines with his crayons. he was helping younger children with their exercises. During recess he actually played with other children, something he had never been able to do before
Three months later, Jason started kindergarten in a public school. The teacher writes, “Jason has been a student in my class for six weeks. He has demonstrated the ability to ‘get along’ or ‘function’ successfully in my classroom atmosphere. Jason is working on level six in reading. He works on his problems with very little difficulty and has no problem staying on task. In my classroom, Jason has shown patience, creativity, the ability to complete tasks from start to finish. He has shown me respect, a willingness to assist me as well as other students. He knows my class rules as well as the school rules and several times I have overheard Jason reminding other students of the rules. Jason gets along well with his peers as well as with those a grade older. He shares his ideas and possessions. His social skills are good and he has learned to accept responsibility.”
Jason did well in school during kindergarten and first grade. He had to spend several hours each day in a day-care program on campus. The day care program was very unstructured and the staff was very young and inexperienced. As a result there were more discipline problems in day care than during school, but nothing compared to the years before he was taking medication.
In the beginning, Jason was able to sustain this behavior on very moderate doses of medication but as time went by the dosages had to be increased, new medications were tried and abandoned. During second grade he started to attend a new school. Here they had a very structured day care program as well as a strong academic program and strict discipline. He didn’t exhibit the wild out-of-control behavior but he was also not functioning well in class. He had trouble starting his work and more trouble finishing it. He was often seated outside the room. He was taking extremely high dosages of all medications, at the top of the “safe” limit.
I began studying again, hoping to find something that would enhance the medication, and allow us to reduce his dosages. I tried vitamins and they did help improve his behavior and performance in school, but still he was not functioning well. His medications were so high I was afraid he would have liver or kidney damage.
In the spring of 1989, our doctor at City of Hope told us of a treatment he had heard of that showed promise. It was EEG Biofeedback, a process by which a child was taught to monitor his how brainwave activity and normalize it. He asked if anyone was interested in giving this treatment a try. We said we would try it for Jason. We hoped that the EEG biofeedback could enhance the medication and possible, in the long run, replace it.
I was familiar with biofeedback. Twelve years prior I was in a car accident and received a severe whiplash. As a result of my injuries in this accident I had a nerve impingement in my neck which caused a severe headache. I was treated with muscle relaxers, pain pills, and physical therapy for almost two years with no relief. At that point, my neurologist enrolled me in an experimental program using physical therapy and EMG biofeedback. Within two months, I was pain-free for the first time. The pain has never returned because I was able to recognize and control the tension before it resulted in headaches.
I contacted my insurance company. They assured me it was covered if we were referred by our physician. We obtained the referral and contacted the biofeedback therapist. Jason began his treatment in the spring of 1989. We began our treatment one visit per week. After the first two or three visits, I noticed that he was using his time more productively, was less fidgety, and was calmer and more relaxed. His handwriting which had always been very messy and hart to read was drastically improved. The letters were well-shaped and within the lines, the spacing between words was even.
With this evidence I was convinced that this treatment would be effective but I also knew that once a week would not be sufficient. Jason began to attend sessions three times a week. We found that different frequencies of brainwaves controlled specific behaviors. By working on SMR we were able to improve his concentration and ability to stay calm. Focussing on Theta helped with Jason’s attitude. We wanted to get rid of his defiance, oppositional behavior and negative attitudes. Beta improved his concentration and energy. In addition, he became hungry for knowledge. He would throw himself into his academic work and asked a million questions. The fourth frequency we worked with was “High-Beta”. This had previously been used as an indicator of muscle tension. We did not think it had value in treatment of symptoms but what we found was that if Jason’s High-Beta was not kept tightly under control he would start to behave “weird”, making strange faces, walking strange, laughing hysterically at inappropriate times.
We focussed the training on Theta to get his negative attitude under control and High-Beta to keep the strange behaviors under control. As time went by, his brain waves became more stable and his behavior was more under control. He was doing better than he had in years, since the first year of medication. We began to gradually reduce the medications he was taking and the positive behavior continued.
One exciting thing we noticed during the EEG biofeedback training was that the training offered the same benefits as medication, as well as the same side effects. However, unlike medication, over time the side-effects went away. With Ritalin, Jason was calm and able to concentrate, but he also lost his appetite and had trouble sleeping. With biofeedback we noticed the same calmness, concentration, lack of appetite, and sleep problems. Within two to three weeks, the benefits remained, Jason’s appetite returned and he was able to sleep.
We continued the treatment for about three months. With each treatment session his brainwaves were more stable as he began, he had more control over them during the session, and was able to sustain the control for longer periods. As the training was made more and more difficult he could easily adapt and adjust his waves to the more difficult level. It was like he was an athlete in training, the more training he had the stronger his control and the longer he was able to maintain this control. It was as if he had been born with a “lazy brain” and the biofeedback was exercise which was strengthening his brain. We began to have hope for a permanent “cure.”
Jason’s daily medication was reduced drastically. He had been taking 8 mg of Haldol, the highest safe level for someone of his age and weight. He was able to reduce to 1 mg. He had also been taking 90 mg of Ritalin. This was reduced to 15 mg.
Jason started a new school year. He was now in third grade. For the first six weeks of school he excelled. He did all his work in class, was cooperative, happy and successful. At this time our medical insurance stopped paying for Jason’s treatment. We could not continue Jason’s treatment and stopped taking him to the therapist.
Over the next two months my son’s life fell apart. He gradually lost the benefit of the biofeedback and no longer had the benefit of the medication. We were unable to find a proper medication level for Jason. His behavior became explosive, belligerent, frustrated, moody and depressed. He was unable to follow instructions in class, didn’t complete his work, could not work or play with his classmates and was belligerent, defiant and vindictive toward his teacher. He spoke of killing himself. When I asked why he said, “I’m just too bad. It would be better if I were dead.” My son was only 9 years old.
I worked to find the money to continue Jason’s biofeedback training. At the same time, I filed a lawsuit against the insurance company for the treatments he had already received and we had paid for but not been reimbursed for. I will never forget the helpless, hopeless feeling as I watched my son’s condition deteriorate.
That is when I determined that he needed the training on a daily basis so he could have permanent, sustained control over his brainwaves. I also decided that I could never again allow his health and success be left to the whims of some insurance company. We asked the therapists if it were possible to have biofeedback equipment for use in our home and if I could become trained to take over my son’s treatment on a daily basis.
We were able to get the equipment in December, 1990. It was the best Christmas present we ever had. We began his daily treatment immediately. Each evening he would spend 30 minutes in training. We focused on Theta so we could improve his attitude and behavior. Within two weeks his behavior was drastically improved. He again began to have control over his brainwaves.
It was a rough spring for our family. I still did not have his medication adjusted to control his behavior so we were relying almost totally on the biofeedback. Mornings were very rough for Jason at school. I changed his treatment time from evening to morning. I wanted to set his “internal clock” so he would become accustomed to starting each day by getting his brain waves under control. This worked much better.
Slowly, but surely his brainwaves became more stable. His periods of control were longer. He didn’t have the extreme swings in behavior, frustration or mood. His fine motor control improved, I could read his handwriting again. His sense of humor returned. He was a fun person to have around again.
This daily treatment has continued for over two years now. During this time my son qualified for our District’s GATE program (Gifted and Talented). He made honor roll for the first time, was awarded a teacher’s award as most outstanding student, and received recognition for outstanding citizenship and sports. The level of his medication is lower than it has been since he started taking it. It has been over a year since he had a discipline or behavior problem of any kind at school. Jason has made many new friends, has run for student council, and is in the honors classes at his intermediate school. He can go for weeks without biofeedback training while maintaining control. And he recognizes when he has gone too long without biofeedback and says, “Mom, I need to go on the machine.”