Helping Our Son with Tourette’s: A Mother’s Letter

Dear Sheila,  I am writing to you because our family has been affected by Tourette’s Syndrome and I want to thank you for your work as an educator and advocate in this area.

My son was diagnosed with Tourette’s two years ago when he turned 7. His tics started gradually about a year before his official diagnosis,. The diagnosis was not a surprise, but what did surprise me was how quickly they went from mild to fairly severe.

We live in Nova Scotia, Canada. Reading your book, Natural Treatments for Tics & Tourette’s, helped give me the courage to step outside the conventional medicine box to help him. I used to think Tourette’s was a specific genetic condition. Although I agree there are definite genetic factors, I now view Tourette’s as a symptom of one or more underlying problems.

I want to start by stating that my son does not have OCD, autism, ADHD, or other conditions that often accompany Tourette’s, or rather, there are no major indications at this point. He is currently in grade 3 and eats well. I have a background in nutritional sciences and enjoy cooking. His diet has always been well balanced and he eats a variety of foods including regular omega-3 and probiotic supplements.

When he was a toddler, however, he suffered from severe constipation. Long story short, after removing dairy, gluten, and processed sugar from his diet based on an IgG food sensitivity test through a naturopath, the issue very quickly resolved. He followed this diet for nearly 2 years.

After that, we transitioned him back to a regular diet and he seemed to be doing fine. Then, when he was 4 1/2 he was hospitalized for nearly a week with a staph infection (scalded skin syndrome ) requiring a course of IV antibiotics followed by oral antibiotics. I strongly believe these events played a significant role in the onset of his Tourette’s. Statistics show that a considerable percentage of those with Tourette’s also suffer from various digestive problems and there is no doubt in my mind there is a connection. It is unfortunate there isn’t more scientific research in this area.

To date, his tics have decreased significantly. Over last few months he has virtually no motor tics, and his vocal tics are quite mild. If I had to  place a number on it, I would say we are seeing about an 80-90% decrease. I started compiling a detailed summary and analysis of each treatment and trial we have completed, but for now I want to share with you our general success. Considering everything we have done, I would say our overall success can be attributed to magnesium, immunotherapy, and faith.

A magnesium supplement we liked

Magnesium was the first treatment where we noticed a difference in the tics. We switched from magnesium citrate to “Mag Matrix” which is a combination of magnesium glycinate, citrate, and malate and more easily absorbed and works less like a laxative than some others. His target dose was determined by the amount given to achieve about one “normal” formed stool per day. For our son, this was about 600 – 700 mg per day.

With this, we saw our first signs of a decrease in motor tics. They were becoming less noticeable during the day with activity, indicating it was making a positive difference. Related to this, I want to point out that my son frequently complained of stomach aches and leg pain at bedtime. Since he did not really complain about this during the day, my husband and I often wondered if it was a tactic to delay bedtime, or perhaps a response to feeling afraid. We also tended to dismiss his leg pain as “growing pains”. Remarkably, once we started our son on magnesium, his stomach ache and leg pain complaints completely vanished.

Starting immunotherapy

In December 2018, nearly a year after his Tourette’s was officially diagnosed, our naturopath suggested trying low dose immunotherapy (LDI) using streptococcus. Basically, this treatment is giving the body very low doses of the bacteria to activate an immune response to it and strengthen the immune system.  Strep infections are often connected to Tourette-like symptoms, etc. Although his bloodwork and throat swab nearly a year ago did not indicate strep was a problem, his stool sample several months prior did indicate an overgrowth of this bacteria, so I was willing to try. If strep was not a problem, my naturopath indicated this treatment would show no changes. If so, we would notice changes rather quickly and need to work with dosing to determine the optimal level.

The plan was to start with the lowest dose and work up to the highest dose every two days. If the dose is too low, no changes will be seen. If the dose is too high, an increase or flare-up of symptoms would be noted, and if just right, a decrease in symptoms would be observed.

We had some ups and downs until we found the right dose with the naturopath’s help. We literally saw a noticeable decrease in his vocal tics within 2 hours of taking this dose. When we gave him the same dose two days later, we saw the same response and I remember for the first time in over a year, his little body seemed so quiet and peaceful falling asleep. I cried. The entire process was not easy, but it was worth it.

We have been able to introduce select foods without a problem.

Leaning on faith

I list faith because this has been part of a spiritual journey for me. When I tell people our story and all we have done, the response is often “your son is very lucky to have you as a mom.” I really believe there is purpose to all of this.

A year before his diagnosis, I quit my job and enrolled in nursing school to become a registered nurse. I was already university educated with a master’s degree in nutritional sciences and had a good job. Nursing was not something I always wanted to do, but I was feeling “unsettled,” and nursing kept “coming up” in my quest to find greater purpose. My son’s diagnosis came one year into an intense two-year program. I think my science background, combined with my newfound nursing/medical knowledge gave me the confidence to step out and seek alternative therapies.

I also came across your book, Natural Treatments for Tics & Tourette’s one day and started carpooling with a classmate who I later found out was diagnosed with Tourette’s as a child. I also take comfort in the scriptures.  I trust that God’s purpose is greater than our problems, and knowing he loves us has brought me comfort and perspective.

Our current status and nutrients

So this is where we are right now: Overall, his motor tics are virtually gone and his vocals are minimal, but still fluctuate. He is still getting the immunotherapy doses on a regular bases and we are learning what doses to give and when, based on his symptoms, for best results. He is still taking magnesium, but only about 200 mg per day. Additionally, he gets daily omega-3, probiotic and vitamin D supplements. The omega-3 and probiotic were regular supplements before his Tourette’s surfaced, but the vitamin D3 began at the start of his diagnosis when his blood work indicated he was low.

We are also still planning to try other natural approaches under the guidance of our naturopath in an effort to determine all root causes. And while we try to minimize “junk” we are currently not restricting specific foods. Perhaps if we did, we would see even greater improvement, but for now we are trying to maintain a happy balance.

I have learned so much over the last couple of years including how much more there is to learn. It is unfortunate more effort and funding hasn’t been placed on research in this area.  Looking across all health categories it seems little emphasis is placed on natural or preventative approaches, and that needs to change.

I am very grateful for your hard work and efforts over the years to educate and advocate for change. I want to be part of the solution, so I hope this information and our experiences can help others. Feel free to pass this information on.

Sincerely, Catherine