Our Son’s Tic / Tourette Diary: Support and Hope for Us and Others

[HopefulJourney]

Hello,

My son is currently 12 years old and has had tics since he was 7. (my second son has nothing) At age 9, he was diagnosed with Tourette Syndrome by a renowned university. He does not exhibit any comorbidities such as obsessive-compulsive disorders or ADHD. According to our professor at the university, this would further enhance the positive prognosis, and we really want to believe that. The initial period was the hardest time of my life. The feelings of helplessness, sympathy, and despair were overwhelming, leaving my wife and me in shock. We were like in a trance. I know every study and publication on Tourette Syndrome and have devoured everything to help my son in any way I can. Since then, I have been keeping a sort of diary to record the developments. I only recently discovered this forum and have read everything. I understand you all very well and want to encourage both you and myself.I plan to share my diary, which I had previously kept private, on this forum at a later time.

This condition is like a mystery box, making it difficult to predict outcomes, as ultimately, each case is unique. I often oscillate between hope and thoughts of naivety.

Our son has a range of vocal and motor tics, which vary greatly in their fluctuations. There are few months where he has almost no tics, and then suddenly they start up again. Our most distressing tics are screaming (squeaking) and head jerking. It is a very loud and sharp squeaking. The squeaking draws attention from those around him, which triggers him even more. Sometimes I'm afraid that his vocal cords might get damaged. The head jerking causes headaches and discomfort, and there is nothing we can do about it. We never let our concern for him show. We give him a lot of love and support him in every way we can. He is very well integrated into sports clubs, has many friends, and performs well at school. He doesn’t like learning at all, and homework is a daily struggle, especially during a severe tic phase. The entire school and all the teachers are informed. The parents of his friends and the clubs he is involved in are aware of his condition.

What makes it so challenging to grasp this condition is that online, you mostly see children with more severe cases, such as coprolalia or complex tics involving multiple movements. Our son does have tics, but generally, he does not have complex tics with his arms. For example, he makes grimaces and squeaks, or jerks his head and sniffs. When the tics are very severe, he might do them about 40 times a minute. Currently, he squeaks about 10 times a minute.

What I always find missing are experiences regarding fluctuations. Some studies mention a peak in the condition around age 12, others from ages 12-16 or 10-20. I never know if we are currently at a peak and it will get worse or if it will stay the same. I sincerely hope for a calm period soon when the tics decrease. During these phases, like now, I feel completely beside myself. Due to the noise, I hear him constantly and feel a great deal of empathy and worry about the future. While motor tics are less noticeable, vocal tics inevitably make one feel sad. Of course, we ignore it. We encourage him by saying that it will eventually be over or greatly reduced. However, we don’t talk about it much, as our university professor advised that we shouldn’t focus too much on the condition. We also don’t attend support groups because we don’t want him to pick up tics from others. One of my greatest fears is that as he gets older, he will search online for Tourette Syndrome and come across videos of children with more complex tics, and then adapt those tics himself. When he was first diagnosed, he had a brief period of coprolalia, but it has not reappeared in recent years.

We focus on a balanced diet and do not detect any allergies, at least not related to the respiratory system. He has no allergy symptoms. So far, our university and the Tourette's specialist society have not informed us about possible allergies, food intolerances, or other factors related to Tourette's. However, we are still open to having allergy tests or food intolerance tests conducted if necessary.

On the recommendation of his psychologist and the university, our son is currently taking Tiapride, which he tolerates very well, except for occasional drowsiness. My diary shows that when we increased the dosage, there was a temporary improvement. Based on experiences from others that it is normal for calm periods to follow severe phases, I am uncertain whether we should discontinue the medication. Perhaps it has never been effective, and the improvement was due to normal fluctuations. Once a calm period returns, we will likely try tapering off the medication. For now, I am concerned that this phase may last longer or worsen.

Recently, we have also started giving him magnesium, vitamin B6, and omega-3.

We would be happy to stay in touch with other parents here and provide updates from time to time. This will help others after us to better understand this condition.

If you have any questions, feel free to ask me everything. 

Kind regards

Edited September 13 by HopefulJourney

[Sheila]

Hi HopefulJourney, Welcome to the Forums. It's great you give so much attention to your son and are trying to find answers. At the risk of repeating information, as you said you have read the forum, I'd like to make a suggestion for your diary. If one of the goals is to keep track of possible triggers for an increase in symptoms, it might be helpful to have a list of possible events or items that could play a role in increased symptoms.

Our organization published a book, Stop Your Tics by Learning What Triggers Them (it's on Amazon), which breaks down various possible aggravating factors or triggers and provides feedback from families on what they discovered. Dr. Doris Rapp wrote a bestseller many years ago that focused on "unrecognized allergies."  I mention that just to expand your thinking about allergy. 

I'm attaching a resource that gives an idea of what a search for underlying issues in Tourette's might include. That is not to suggest there are easy answers for everyone. And as you point out, everyone is unique. You could look it over and see if there are areas you haven't thought of yet. FYI, we have had feedback from numerous people who found that exposure to harmful chemicals -- both obvious toxins like pesticides, as well as more hidden toxins in everyday items (i.e., cleaning products, plug-ins and other air fresheners) triggered vocal tics. At the same time, many other agents, and also infections and imbalances, can be involved with vocal and motor tics.  

I know it can seem overwhelming. Hopefully, your diary will help you find some clarity. I'm wishing you the best with your efforts! You have every reason to be hopeful. 

 

A Checklist for Brainstorming Triggers.pdf

[Atex]

I can really relate to your comment about feeling like you're in a trance, like it's almost unbelievable that this has happened.  And, I totally get your observation about the focus on the severe tics; I think this is a big reason why the condition is so under reported.

We were about on the same track with my daughter and really turned things around at about 9.5yr old age once we identified a few of the main triggers, and they were not obvious.  If you would like to know more, feel free to reach out to me.