Jersey Shore mom details 5 years of raising a son with TS

In January 2006, after my son turned 4 years old (and a few days after his great grandfather passed away), he started shrugging his shoulders with a head twitch — like the collar of his shirt was bothering him. This went on for a couple days. Then he started flipping his head backwards quite hard. It didn’t seem to bother him, but we knew “that wasn’t right.”

We took him to a pediatric neurologist, who diagnosed him with tics.  We chose not to medicate, as symptoms were “not that bad.”  In 2007 (almost age 6 — kindergarten), when his vocal tics started to be bothersome in school, we visited the doctor again and he was then diagnosed with T.S. with ADHD.

Although, I “really” didn’t want to, I opted to try medication this time, as it was disturbing the class.  We started with a low dose of Tennex. After it seemed to slow him down for about a week, it then seemed to feel like it wasn’t working anymore, so with the doctor we would increase the meds.

After about 2 months on meds. my son punched a female classmate in the stomach as well as a female cousin when visiting one day.  He never hit anyone before, and I knew I had to stop the medicine.  We never medicated since.

We also brought our son to a doctor in New York City in 2009 just to see what he had to say — they would never treat a child his age (8 years) with such mild tics.

We have been seeing a homeopathic doctor now. He seems to let all his frustration out on us when he gets home from school, which frustrates us because people don’t see him act this way in school and when we talk about our issues at home it’s almost like we’re lying.

He has issues with reading and comprehending.  Homework with that is torture for us.  In math, he is very good, and that is a breeze for him. He is in 4th grade. He has a few friends, but I think his overexcitment with things keeps others away.  I don’t believe anyone makes fun of him or his TS.

My son was my firstborn and I kept calendars for his first couple of years of illnesses, milestones and other “strange things.”  We can go back to when we first noticed tics:

  • Summer of 2003 (20 months old) — old man clearing-the-throat noise
  • March 2004 (3 years) — heavy eye blinking
  • December 2005 — shoulder shrug

Our family consists of myself, my husband (who had an arm tic when he was young and has some OCD issues now), our 9 3/4-year-old son with TS (HE says he’s 9 3/4) and our 6 1/2-year-old daughter (not diagnosed with anything).

Well, that’s most of our story, if not all.  Hope it’s helpful!


  1. Our daughter Maddie began to tic when she was 4 1/2 and was diagnosed at 5 1/2. She is now 6 3/4. It has been a long, hard road so far but we have been so lucky to find a great support system in NJ btn a fabulous therapist, neurologist and the support of other Mom’s and Dad’s of kids with TS. Maddie’s biggest issues aren’t her tics but rather her episodes of rage described by her as “something inside my body I can’t explain or control” and her obsessive tendencies. We have had success with a combination of medications, dietary changes (no chocolate, dyes and organic foods), vitamins and cognitive behavioral therapy. I worry that my 3 1/2 year old also has TS but I know that, like we have with Maddie, we’ll cross each bridge as we get to it. Thank you for sharing your stories. It’s so helpful to know we’re not alone.

    • You mentioned a great therapist. We have been through 2, paying out of pocket with no great feeling of success. We are in Morris county. Is there any way to share or recommend a Dr. online? I would love to have a great therapist for my 10 year old girl with TS.

  2. My son started showing signs at 2, and he is 5 now, we got a confirmed diagnosis when he was 4. Our first neurolgist we saw wanted to treat him with tennex, I disagreed and met with another who was against medicating unless it was really out of control. He said the medications slow it down but it never goes away and usually the medications have more side effects. I have gone organic, dye free, odor free in his diet and surroundings, also give lots of vitamins. Have you noticed any life style changes that help your son? Or diet change? Vitamins?

    • Hi Erica.
      How have the diets worked for you? We haven’t tried yet. We just started seeing a chiropractor. I wonder if anyone has had any positive (or negative, yikes) feedback for chiropractic care.?

  3. My son at 2yrs. old was full of anxiety, he was afraid if I left his side.He was afraid of anything in motion, swings,slides,seasaws,etc.He had terrible temper tantrums all day long.He started blinking his eyes at 3yrs. old.He is sixteen now and having alot of trouble controlling his temper.He also has ADHD,OCD and is taking kapvay and abilify.I wish there were more parent meetings in Bergen County I do not drive so can’t get to the one I heard of.

  4. My eldest daughter is 9 1/2 and my second daughter is 6 1/2 (I also have a 3 year old), and we also started seeing the tics early! My daughter didn’t get diagnosed officially until she was 8. Teachers always think she is a model student at school, but at home she couldn’t be more opposite! Sounds like a lot of similarities. Thanks for sharing your story!

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