BY MARK’S FATHER
My son Mark is now 14 1/2 years old. He’s a wonderful kid—socially accepted, active in sports, and doing well in school. But we went through an absolute nightmare with his tics.
My wife and I started noticing eye tics when he was about 6 or 7. With time, the eye-rolling and blinking increased in severity. He was diagnosed with Tourette syndrome by a local pediatric neurologist. After a couple of years a new tic developed. Now in addition to the eye tics, Mark would repeatedly jerk his head as if trying to get the hair off his forehead.
Needless to say, his mother and I were anxious to give Mark some relief. I started researching what our options were. We implemented a number of interventions along the way: dietary changes, fish oil, pharmaceuticals, magnesium, and essential oils. We also tried cranial sacral therapy and Brain Balance. The Brain Balance sessions did not help his tics, but they did help him focus on academic work. In fact, he used to have trouble generating new ideas for writing assignments (versus writing on specific topics) and we noticed a big improvement in that area. Mark has allergies; we didn’t actively explore a possible allergic connection to the tics but we never noticed any relationship.
Seeking help from dentists instead of a neurologists
Searching for more answers, I read online about people using dental appliances to reduce tics, and we decided to give it a try. We saw a practitioner in our state of Massachusetts who developed an appliance for Mark’s lower jaw. The basic concept is that for some people, a misalignment of the jaw or teeth can create pressure on nerves (in particular, the auriculotemporal nerve) that can impact the central nervous system and result in tics.
The appliance helped reduce tics significantly. Initially there was modest improvement, and after a few weeks the change was dramatic. We went through a number of mouthpieces! Mark lost one. He broke one. Another broke due to his growth. And I had to dig through the trash a couple of times when they were inadvertently tossed away.
Mark didn’t mind wearing the appliance because it made his symptoms so much better. He wore it around the clock unless he was eating. After the appliance broke due to growth, the dentist suggested it was time to use braces instead. Unfortunately, that was a mistake. It turned out that it was premature. About six weeks after we put the braces on, he developed horrible head tics. He would flick his head as if getting his bangs out of his eyes. But he would be doing it so fast that it was like a baseball card in moving bicycle spokes. And it could last for 45 minutes at a time. Sometimes I could physically restrain him and it would stop. But other times it would just go on.
We took Mark to Dr. Anthony Sims, a dentist in Columbia, Maryland who specializes in craniofacial TMJ. When he saw the severity of the tics, he wasn’t sure they were simply tics. He recommended we go to Johns Hopkins emergency room. After a couple of consultations there, it was determined that the movements were indeed severe tics, and Dr. Sims continued with his evaluation. A few weeks later, we visited the Tic and Tourette’s clinic at Yale University. They looked at videos of those dramatic tics. We learned that Mark in fact did not have Tourette syndrome (there were no classic vocalizations). He had a chronic motor tic disorder. We were told that the dramatic episodes were not the result of his tic disorder, but they were not sure what was causing them.
In any event, Dr. Sims made an adjustment to the treatment we had initially followed; he created an upper mouthpiece in addition to the lower mouthpiece. That worked! We saw some immediate improvement, and within three weeks the tics and urges to tic were practically all gone. Mark was very grateful for the timing of this. His sixth grade class was prepared to go on an end-of-the-year trip, but he had just missed three weeks of school because his tics were too bad for him to attend. His symptoms improved just in time for him to go on the trip.
Sometime later, Mark noticed that he was again feeling an urge to tic. Not ordinary tics, but the dramatic head tics described earlier. This would happen when he exerted himself physically or mentally. He was able to suppress the urges, but that gave him terrible headaches. We saw Dr. Sims again and he showed us that the mouthpiece no longer fit properly and some adjustments were needed. Once those adjustments were made, the tics diminished again.
Success: Moving on without the appliance
This past April, Mark lost one of the mouthpieces. I wanted to take him to see Dr. Sims but he resisted. He pointed out that he’d barely been wearing them during the prior month or so and he felt he didn’t need them anymore. We didn’t force him to go. Instead, we saw our local orthodontist who had been researching this effort along with us and had been communicating with Dr. Sims. We found that having a local professional who understands this approach is invaluable. The orthodontist could make minor adjustments to the appliance and help us brainstorm situations. This doctor suggested that Mark’s jaw seemed to have grown into the position that the mouthpieces had been guiding it to. So he didn’t need to keep wearing a mouthpiece. Dr. Sims also agreed that Mark might not need one any longer now that his jaw growth was nearly complete.
Since April, Mark has been completely asymptomatic and without an appliance. He has never gone so long without tics! The entire family is very grateful for this intervention. For us, it was incredible.
I would implore others to research this approach. I’ve read that perhaps this only helps people who have TMJ issues. But if my son had TMJ problems, we were completely unaware of it. Both the dentists we worked with said their success rate for treating tics is over 50%.
Let’s spread the word! Any questions?
Obviously not everyone has the same cause for their tics. But if this is the underlying problem, it is incredibly important to address it. Unfortunately this therapy is not covered by insurance at this time. Hopefully it will be covered in the future.
I want to help get the word out on this approach! I hope you will use the comment section below to ask me any questions.
Editor’s note: The identity of this family has been withheld at their request; a stock photo was used.