{"id":543,"date":"2012-02-03T08:25:11","date_gmt":"2012-02-03T13:25:11","guid":{"rendered":"https:\/\/njcts.org\/tsparents\/?p=543"},"modified":"2012-02-03T08:25:11","modified_gmt":"2012-02-03T13:25:11","slug":"a-tourette-syndrome-mothers-long-journey-part-1","status":"publish","type":"post","link":"https:\/\/njcts.org\/tsparents\/a-tourette-syndrome-mothers-long-journey-part-1\/","title":{"rendered":"A Tourette Syndrome mother’s long journey, part 1"},"content":{"rendered":"

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.<\/em><\/p>\n

Hello, I\u00a0 am the mother of a 14-year-old son, Spencer, who has Tourette Syndrome. Unfortunately, we had to take a bumpy road\u00a0 before this diagnosis. I could write a book on our journey so far, and I still don\u2018t have it figured out.<\/p>\n

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\u2019t sleep much, had some ear infections and was sensitive to loud sounds.<\/p>\n

He was otherwise very healthy and always in the 95 percent\u00a0on the height\/weight charts.\u00a0 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\u00a0first\u00a0birthday.<\/p>\n

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.<\/p>\n

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.\u00a0 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.<\/p>\n

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.<\/p>\n

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.<\/p>\n

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.\u00a0 It was clear he was not an average kid, but there was nothing to fit my son.<\/p>\n

It was at this time that I started to going to a child and family therapist to help me with solutions for Spencer\u2019s behavior.\u00a0 She felt for me, but nothing helped.\u00a0 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\u00a0four preschools by the time he was 5.<\/p>\n

I made the decision to enroll him into Kindergarten, even if he\u00a0wasn’t mature.\u00a0 I knew they would have to accept him, \u201cwarts and all.\u201d\u00a0 The calls came during school hours, just the same.\u00a0 He was too disruptive, oppositional and impulsive.\u00a0 The testing at the school for his intervention confirmed what I already knew, Spencer was above average in intelligence.<\/p>\n

We started going to a child psychologist, whom I will refer to as Dr. L.\u00a0 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,\u00a0 asked the same questions, spoke very fast and then would send us away with a prescription. For\u00a0more than five years,\u00a0Dr. L. told us Spencer had ADHD and possibly a mood disorder.<\/p>\n

Spencer\u2019s 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.<\/p>\n

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.<\/p>\n

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.<\/p>\n

We reduced the dosage, but the tics remained. This was the beginning of a long bumpy road of over\u00a0five years and\u00a0two pages of\u00a0 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.<\/p>\n

Years of starting a medication, reducing, changing , combining and stopping a medication all\u00a0 because Spencer\u2019s 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.<\/p>\n

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.\u00a0<\/p>\n

For many years, I had searched desperately for a piece of my son\u2019s 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.<\/p>\n

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.<\/p>\n

During this time I met someone, married and had a daughter. The struggles and friction over Spencer\u2019s 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.<\/p>\n

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.<\/p>\n

During my divorce, Spencer\u2019s 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\u00a0 jaw rotating (later finding out by a movement specialist that this was from medications).<\/p>\n

When Spencer\u2019s head started snapping back all day long, I really started to panic. I thought for sure that\u00a0two 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.<\/p>\n

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