Comments from Readers on Tourette Syndrome

This first comment is from our series on Why the Tourette Syndrome Association Should Be Investigated I am truly thankful for finding Sheila Rogers on the internet after taking my son to doctors for years for his tics.

He was never diagnosed with Tourette’s but for over three years he was seeing a neurologist and taking blood pressure medicine for his tics, which were steadily increasing. I asked numerous professionals for advice and there was none except that hopefully he would grow out of them.

The medical community and the TSA should be looking into and studying environmental causes, and teach doctors to treat the cause not the symptoms. When I first started reading her book, we took small steps to change things in the home. I began using organic cleaning materials, cut down the amount of video games being watched and eliminated some of the obvious foods additives. During this time I took my son for a comprehensive food allergy test. It took a few months to receive the report.

During that time I took him off his prescribed drug, gave him magnesium supplements, and started keeping a food journal. As a single mom with a full time career it was hard to make substantial changes so I have done what I can within reason.

When we received the results back I was astounded. He was allergic to eggs, bananas, and vanilla bean among some other foods too. In the past he would eat all three items almost daily. We have not eliminated them completely, but have minimized their intake and I can say his tics are barely noticeable.

I know if I explained this to his pediatrician and neurologist they would say it is a coincidence because there is no medical proof. New studies are needed so that this information is available to everyone who has a child or loved one suffering. Thank you Sheila for opening my eyes and helping my son!

From Sheila Rogers DeMare: Thank you for your comment LG. It’s inspiring to read how you worked along, step by step, to find answers for your son. And so great that you decided to keep a food diary. I must say most of us might not have thought to eliminate something like vanilla, but one never knows what could be a problem. But looking at something that is eaten every day is often a clue.

You have accomplished a lot as a single parent! It’s certainly easier to reach for a pill than explore dietary and nutritional issues. Congratulations! And we really appreciate you taking the time to share.

A comment on the criteria used to diagnose tics and Tourette syndrome

I find the diagnostic criteria very confusing.  My child has had a few different tics over the past year.  Never occurring together and never occurring for more than a week or two.  My dr didn’t seem very concerned, but naturally, I am.  I am looking for triggers because I feel there are some.

What I don’t understand is can a child/person have transient(or provisional) tic disorder for more than one year or do they automatically receive a diagnosis of Tourette’s?  I originally thought that people could be diagnosed with transient tic disorder and have this for life.  The way the diagnostic criteria reads is that if it is present at all for more than one year it is not transient.  Now, does this mean present for 12 months in a row or present at all(with fluctuation) for 12 months. Very confusing.

From Sheila Rogers DeMare:  Hi Dorothy, you are so right that the different tic diagnoses are confusing. Try to remember that these are to a great degree arbitrary labels. Arbitrary in the sense that the medical community has drawn lines in the sand and assigned different labels–but this doesn’t necessarily help your child. A parent recently called me and said, “My son has had vocal tics and body tics for 11 months. The doctor said we should watch and if it goes on for another month it means he has Tourette syndrome. Then we can talk about medications for Tourettes.”

Even the doctor feels his or her hands are tied unless they consult a calendar. How has this helped the family? What if the manual said 14 or 16 months before a diagnosis? What is being done to help the child in the meantime while everyone just watches the days go by? Of course it’s not that that strong medication is desirable as a goal. But families shouldn’t have their hands tied over a label. They should begin trying to figure out why their child has tics as soon as they begin.  Just remember that having tics is not normal. Period. Something is causing it and people should be encouraged to find out what that could be. 

Sometimes adults know they can get an eye tic when they’re overly fatigued, and they know from experience that it will go away once they are rested. But not all  transient tics — or provisional tics, to use the new terminology as you point out — are not so simple. They represent a state of imbalance and should be addressed. Not with strong drugs, but with efforts to calm the nervous system through more natural means with a goal to correcting the underlying imbalance. The current Tourette syndrome diagnosis includes having vocal tics as well as the “motor” or body tics for more than one year. And a chronic tic “many times a day nearly every day or on and off throughout a period of more than a year</strong>.”  Does your child fall in that category of many times a day nearly every day? If not, I think you are safe in calling it a transient tic. Interestingly, the publication A Physician’s Guide to the Diagnosis of Tourette Syndrome by the Tourette Syndrome Association says: The difference between Tourette syndrome and other tic syndromes may be no more than semantic (!)

So, I’d suggest you don’t worry about the diagnostic label and carry on with your instincts of looking for triggers. Depending on the situation, you may need professional help to find them, and then further, to hopefully learn what can be done to calm your child’s hyper-reactive state. You are so right, it is confusing (and confining) if you stick to the labels. If you simply look at tics as a symptom of something being out of balance in the body, it is not so confusing and you can begin to help your child.