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A Tourette Syndrome mother’s long journey, part 1

This is part 1 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son.

Hello, I  am the mother of a 14-year-old son, Spencer, who has Tourette Syndrome. Unfortunately, we had to take a bumpy road  before this diagnosis. I could write a book on our journey so far, and I still don‘t have it figured out.

It has never been easy, including the beginning that started with the worst case of Hyperemesis, Pitocin, 24 hours of labor and hemorrhaging to get him into the world. Nursing was a challenge, he didn’t sleep much, had some ear infections and was sensitive to loud sounds.

He was otherwise very healthy and always in the 95 percent on the height/weight charts.  He walked at 15 months and was running within the end of that month. He had an advanced vocabulary and figured out how to open up the most advanced cabinet locks by his first birthday.

He had an atypical febrile seizure at 14 months old that was severe enough to have him admitted, but thankfully all the tests came back positive. As a toddler, he was very impulsive when it came to playing with other children and it was not long until we were outcasts in play groups. It is then that I started to feel isolated.

Spencer has always been a very loving, happy and social child who never showed any signs of anger, anxiety or OCD in the classic symptoms.  He was overly sensitive to loud noises and would often cringe and cover his ears. Though I mentioned it to his pediatrician, she had nothing to share about it.

He was very impulsive, and at 3 years old, he could not function easily in a preschool where I had hoped he would benefit socially. I realized that he became overwhelmed . He was aggressive and impulsive when lots of kids were around him. If a child bothered him, he would fixate on them. He is still the same.

He became overly busy when in a small room, so doctor visits were especially challenging. He was never hyper, but following directions, staying on task and blending in was not easy for him. I tried going back into the work field when he was 3 years old, but I kept getting calls to come and pick him up because of an incident.

I got complaints from staff that he was oppositional, and I always knew with whom he was not going to do well. He could sit for extended periods while I read to him. so I was told that he could not have ADHD. I know that was incorrect, but there was a lot of misinformation at that time.  It was clear he was not an average kid, but there was nothing to fit my son.

It was at this time that I started to going to a child and family therapist to help me with solutions for Spencer’s behavior.  She felt for me, but nothing helped.  No conventional corrections or suggestions worked with him and still do not. Though I really needed a break during the day with my son, I had to give up on the idea of a career because my son got kicked out of four preschools by the time he was 5.

I made the decision to enroll him into Kindergarten, even if he wasn’t mature.  I knew they would have to accept him, “warts and all.”  The calls came during school hours, just the same.  He was too disruptive, oppositional and impulsive.  The testing at the school for his intervention confirmed what I already knew, Spencer was above average in intelligence.

We started going to a child psychologist, whom I will refer to as Dr. L.  Our pediatrician referred us to him. He was popular, and his fees would suggest he was an expert on all children with behavioral issues. He was never personable, rarely looked up from his speed notewriting,  asked the same questions, spoke very fast and then would send us away with a prescription. For more than five years, Dr. L. told us Spencer had ADHD and possibly a mood disorder.

Spencer’s father and I were not thrilled to start our son on medications, but his challenges were getting in the way of his education and social development. Dr. L. prescribed mood stabilizers in kindergarten, but they were too sedating and he immediately ballooned in weight. He has always had a healthy appetite, but I am very health conscious so it was not from overeating or an unhealthy diet.

We tried another child therapist, with whom Spencer bonded. Unfortunately, it was more like a play date at that age where he got one on one special attention. Again, no suggestions relieved the daily stress in life.

It was in first grade that Spencer was prescribed with his first stimulant after being in a class with a teacher who was very rigid and lacked patience. The Adderall appeared to make a huge difference right away, but within a few weeks, the tics appeared. Perhaps simple tics were present before then, but I did not notice them.

We reduced the dosage, but the tics remained. This was the beginning of a long bumpy road of over five years and two pages of  medications for my son. Dr. L. was always focused on the possibility of Spencer having a mood disorder and never once suggesting that he could have Tourette’s.

Years of starting a medication, reducing, changing , combining and stopping a medication all  because Spencer’s tics would reduce or increase in severity. Many years in fear of tics because this reputable doctor was oblivious to the obvious signs and symptoms of Tourette’s.

My son lost years of therapy, resources and the understanding he needed because none of his doctors were educated on Tourette’s. Spencer was a male, had associated disorders and his tics presented at the typical age of 6. 

For many years, I had searched desperately for a piece of my son’s mystery to complete the puzzle but failed to connect the dots because I believed the stigma of Tourette’s. He never fit under anything perfectly, so I was limited in getting Spencer the help he needed in school.

Spencer did show signs of OCD but they were mild and manageable. He cringed a lot of noises and just raising my voice would result in a dramatic act on his part. I thought he was just being dramatic because I was still oblivious to his real medical conditions.

During this time I met someone, married and had a daughter. The struggles and friction over Spencer’s behavior was a strain on my marriage. My ex-husband never really bonded with Spencer, even though my son was a loving and accepting boy. My ex-husband always took everything personally because he did not understand.

Spencer continued to stand out socially and academically. It was not until I insisted on Spencer being tested at school for an IEP did I start getting any special resources or accommodations. He continued to struggle in class and be impulsive.

During my divorce, Spencer’s tics became more complex. He had developed a large shoulder rolling, but when taken off the year of Abilify, this subsided to a mild shrug. His simple throat clearing, eye blinking, finger fiddling and such were now turning into knuckle cracking and  jaw rotating (later finding out by a movement specialist that this was from medications).

When Spencer’s head started snapping back all day long, I really started to panic. I thought for sure that two weeks of this was going to give him permanent spinal damage. I had his dad bring a C-collar from his hospital to stabilize his neck. I did take him to a chiropractor and by coincidence or not, the head snapping did subside. We also changed medications, but there was a residual of some snapping until then. I am not suggesting you do the same. Just sharing.

0 Comments

  1. Hi Milissa,
    My apologies for not replying to this, sooner. This has been a very chaotic and very full year in life. I hope yours has been nice. My son is entering HS as a freshman in a week so this will be a very “interesting” next few years. 🙂

  2. This is my experience also!
    “It has never been easy, including the beginning that started with the worst case of Hyperemesis, Pitocin, 24 hours of labor and hemorrhaging to get him into the world. Nursing was a challenge, he didn’t sleep much, had some ear infections and was sensitive to loud sounds.”
    Thankfully I didn’t hemorrhage but I had Pitocin for about 36 hours and never dilated, I ended up with a c-section. My son spoke early and well, people were amazed that he spoke so well and had a large vocabulary at such a young age.

  3. Hello, I live in the Sacramento area. I run a Support Group under TSA for almost 4 years after my son being diagnosed with Tourettes. I wish I had more to suggest when parents ask me for specialist referral, but essentially nothing is available here. You would presume there would be given we are the Capitol, but I have little to offer in the Greater Sacramento area and then some. The larger cities may, but nothing like New Jersey has to offer. I cannot move to the East Coast with consideration of my daughter and custody or I would! The weather is not favorable for this weather weenie but I would be highly motivated if it was an option. 🙂

  4. Where are you in California? We went through a lot of doctors while we lived there, and we had our own Dr. L — can’t remember if I’ve already written about him here.

    I saw your comment on Facebook, and you are right; we found California was sorely lacking in doctors who knew anything about TS. Moving to New Jersey turned out to be the best thing we could do for O, as it was here that we found some decent care. I think this is due in part to NJCTS’s high level of activity, as well as to the great clinical psychology program at Rutgers.

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