A Tourette Syndrome mother’s long journey, part 2

This is part 2 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son. You can read part 1 here.

When we got a referral to a neurologist, Dr. C., he spent 15 minutes with us and sent us home with some old-school meds that sent Spencer’s tics into overdrive. I called the doctor in urgency and explained Spencer’s tics and then told him, “It is like he has Tourette’s.”

It is then that the doctor replied, “well, yes, he does have Tourette’s.” I was shocked and upset that he never mentioned this to me in his office. He just said it matter-of-fact, even though there was no known diagnosis.

I immediately went online and started researching Tourette’s and took Spencer off of the meds the doctor prescribed. After reading the facts, I was in tears. I was crying because of all the years spent not having an answer. All of those days I kept telling my son, “Stop doing that” because I did not know better.

I felt guilt because with my ignorance I had this dumb idea that he might actually stop if I kept bringing it to his attention. He also got in trouble at school because his teacher thought his tics were just him acting out and being disruptive. I was ignorant about Tourette’s because I was like the general population that presumes that Tourette’s is just complex tics and cursing.

I was relieved to finally have something that fit and not upset like some parents when their child is diagnosed with Tourette’s. After so many years of what we went through, I finally could exhale

I asked for another referral to a different pediatric neurologist, Dr. A. He has a bit of an ego and thinks highly of himself, but he took the time to explain Tourette’s and answer my many questions. He also shared the statistics of those with Tourette’s as adults and had me in tears.

He told me that he was OK with managing Spencer’s medications in order to relieve the unsuccessful psychiatry. I declined at the time, but after a new, unsuccessful try at a different psychiatrist, I decided Spencer’s neurologist was the best option in understanding how his brain works.

I was absolutely disgusted that the child psychiatrist  we were with for more than five years would not know anything about Tourette’s. I was very disappointed that his pediatrician missed it. I still cannot understand how this is not in their basic training?!

I was determined to have my son’s IEP revisited with this new diagnosis and have testing done for his fine and gross motor challenges. I was told he would not qualify for Occupational Therapy Resources, but I told the resource specialist that I will leave that up to the specialist in that field.

After testing, Spencer qualified for Adaptive P.E. and he also got a diagnosis of Auditory and Sensory Processing Dysfuntion. Another A-HA moment! The resource specialist also told me that my son was better off at a different school where emotionally challenged students were.

I told her, “I am not interested in your opinion, just do what is needed to help my son be more successful.” All the signs were there with Spencer’s sensitivity to sounds and the years of  many challenges he had that make perfect sense with this diagnosis.

Again, because Spencer has mild forms of a few disorders, it was always difficult for me to find answers. After his Auditory and Sensory Processing Dysfunction diagnosis,  I was left feeling more guilt. I tried for years to get Spencer to not be so dramatic with his sensitivity to noises thinking he was just being dramatic.

I was wrong because of my ignorance, again. Why his pediatrician did not notice any common signs was another frustrating part of this road to finding answers?

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