It all began benignly enough. In January 2004 I noticed my six-year-old son, Kage, shaking his head frequently. It almost seemed as though he was being pestered by a fly or was trying to clear his thoughts. After I first noticed it, I dismissed it as something that kids do sometimes.
We home school and at first I thought Kage was shaking his head because he was having trouble seeing. I immediately scheduled him for an eye exam and discovered that he was farsighted and needed glasses for reading and computer work.
Aha! This must be the problem! Or so my husband, Sam, and I thought.
Eventually, though, Kage’s head shaking became more pronounced and complex. Instead of a quick side-to-side shake, he began scrunching up his shoulders then throwing his head backward and forward in a woodpecker-like motion. He would do this, then go back to what he was doing, only to repeat the movement about 1-2 minutes later. Sometimes he would have one of these spasms every 30 seconds.
With the physical tics, he began making various noises – grunting, clearing his throat, and saying “Hmmm.” At first, his tics would occur a few times a day but eventually escalated to occurring every 30 to 60 seconds. Kage was finding it difficult to be a typical six-year-old boy because of them.
His motor tics would be so exaggerated that he would frequently complain of severe headaches and neck pain from shaking his head so vigorously. When I first began noticing these tics, I would mention them to Sam and he would insist it was nothing to be concerned about. I persisted.
After the glasses seemed to make no difference and the tics escalated I called our family doctor. The Physician’s Assistant observed the strange physical and verbal tics Kage was exhibiting and got the ball rolling for us. She told me she had noticed him shaking his head when he had been in the office in December 2003 and had even noted it in his records in case anything came of it. She set us up for an EEG to check for seizure disorders such as epilepsy and an MRI to check for a brain tumor. She asked if there was a family history of any neurological disorders, stuttering, or tics. I told her that yes, my brother and my father both stutter.
The PA then scheduled an appointment with our family physician – the same doctor who had delivered Kage. The morning of the EEG, Sam took some time away from his job to go with us. As we were in the waiting room at the hospital, he watched Kage displaying his complex tics – scrunch the shoulders up, throw the head violently back then forward five or six times, then do the same thing again, and again, and again. While this was going on, Kage would also be constantly saying “Hmmm.”
Sam was shocked. He had been so busy with working long hours that he hadn’t really seen and comprehended the severity of this problem. He thought I was just blowing things out of proportion until he saw for himself. There was a scared little boy and two jittery parents in that hospital on that morning.
The EEG showed nothing, but we still had the MRI to undergo. I was terrified. All that I could think of was that my precious little boy had a brain tumor. I remember the days of waiting for the EEG and MRI appointments and feeling overwhelmed by my own thoughts and fears. If this were me dealing with some unknown illness, no big deal. But my child? That was too much to deal with.
One weekend, we had decided to do some family fun. There was a large home improvement show going on at the Edward Jones Dome in St. Louis, MO – a two-hour drive for us. The show featured various children’s activities and we thought it would be a lot of fun amid all the stress we were dealing with.
The kids were excited and enjoyed seeing all of the booths, but within an hour of arriving, Kage was having such severe tics that we had to leave. His tics were so bad – most likely due to the over stimulation of so many things going on around him – that they were almost nonstop. They kept coming with hardly any break in between. It was so painful for us to watch. It was hard for Kage also. He would often say “Mommy, why can’t I stop shaking my head? It hurts and I wish I could stop.”
The EEG and the MRI were both normal. Sam and I breathed a collective sigh of relief and thanks to God, but we knew we were back to square one.
What was wrong with our little boy?
Among our own family, we had bandied around the possibility of Tourette Syndrome, but none of us knew much about it. We associated TS with uncontrollable movements and someone shouting obscenities (known as coprolalia). I didn’t realize that TS manifested in a wide variety of ways.
When we were finally able to see our family physician her initial diagnosis was Obsessive-Compulsive Disorder. She also mentioned something called PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection. PANDAS occurred when a strep infection produced assorted tics and OCD-like symptoms. Kage had had a bout with strep throat in December of 2003 so we felt as though we had a small clue.
There happened to be a pediatric neurologist in Springfield, IL – about three hours north – who was very familiar with PANDAS and other tic disorders including Tourette Syndrome. When our doctor called this neurologist, he described one of the telltale motor tics as being a woodpecker-like head movement.
Bingo! We were finally on the right track. Our doctor prescribed a small dosage of a medication called clonidine for Kage. Clonidine was normally used to treat high blood pressure, but it was also used to treat ADHD and tic disorders.
We noticed an amazing difference in Kage within a few days of beginning the clonidine. His motor and verbal tics were reduced drastically.
One month later when our appointment with the neurologist finally occurred, we were all breathing easier and feeling like we were seeing light at the end of the tunnel. After examining Kage, the neurologist explained that he thought this was actually a case of Tourette Syndrome, but the diagnosis for TS required documented motor AND verbal tics for a continued period of one year. So, we were back to waiting, but at least we were finally getting SOMEWHERE.
In September 2005, we finally got a diagnosis of Tourette Syndrome. We all rejoiced to finally have a diagnosis for this journey that had started nearly two years earlier. Although he is confident in his diagnosis of TS, our doctor has not yet ruled out PANDAS as the cause and further tests should give us a definite answer.
Kage still has problems and he is undergoing further evaluations. Even though we homeschool, we are able to access various services through our local school district. He is going to be starting speech therapy soon and he recently underwent IQ testing and testing for ADHD as his neurologist requested.
The IQ testing showed high levels of reading comprehension and verbal skills as well as abstract thinking skills. The testing also showed developmental difficulties with Kage’s fine motor skills most likely linked to the TS. Kage’s handwriting is not good and is a part of the fine motor problems. The testing also confirmed Kage has ADHD.
The neurologist warned us that the breakthrough tics would be a constant thing with Kage. Any lifestyle changes – starting school, a death in the family, moving, etc. – could trigger breakthrough tics. . Most recently, when we started back to school in September, that change brought about a new complex tic: Rubbing the face, the forehead, the lips then the cheeks then repeating. With that tic Kage displayed some verbal tics of clearing his throat and saying “um.” After a few weeks, these subsided and finally went away with only occasional manifestations – mainly when he’s nervous or tired.
We still homeschool. Even though Kage had not manifested his TS when we made the decision to homeschool, it has turned out to be a blessing. Kage has good days and bad days. He works best with the one-on-one attention he gets. We also are thankful for our decision because so many people don’t understand when they see Kage manifesting his tics. We want him to be able to enjoy his education without teasing from other kids.
Kage exhibits impulsive behavior and craves sensory stimulation. He is compelled to touch everything and everyone – often slapping, pinching, or kicking his sisters. On the other side of that particular coin, Kage is very affectionate and enjoys snuggling and cuddling with loved ones. He feels the need to be constantly moving and rarely sits still. These aspects of Kage’s personality are challenging for all of us and are misunderstood by most people outside of our family. For many of these reasons, our decision to home educate has been a very good one. The disruptive behaviors Kage displays are only part of his personality – he is extremely creative and gifted in art, loves to read and exhibits exceptional levels of verbal ability, abstract thinking and reading comprehension.
In most ways, Kage is a normal eight-year-old boy who loves Batman, Star Wars, Garfield and pestering his sisters. Although it is possible that Kage will outgrow his TS, it is possible that he may not. We don’t know what the future holds for our special little boy – but we are learning to take it one day at a time.