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Doctors spent years giving me the wrong diagnosis for my child

Sometimes, listening to our mom gut is the most important skill we have as parents. If I hadn’t trusted my instincts that something was wrong when my son began twitching, he may never have been diagnosed with a complex neurological disorder his doctors had missed for years.

The first time I took him to the doctor for strange head and neck movements, he was 7 years old. He’d fallen awkwardly on our backyard trampoline, and his neck had bothered him since. Throughout the day, he would flail his head backward in what looked like a weird attempt at popping his neck.

When I asked him why he did that, he told me it was because his neck hurt. At the physician’s office, an X-ray revealed no damage, but just to be safe, he prescribed our son a neck brace to help with the pain. It would be close to a year before the neck flails subsided, but in their place, my son developed a new, annoying habit: quick snorts through his nose, usually done in twos, all day long.

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At first I thought he was coming down with something, so I did the typical mom things. I rubbed Vicks on his chest and upper lip, used a dehumidifier in his room at night and, to his frustration, asked him to blow his nose repeatedly throughout the day. None of it worked, so once again I brought him back to the doctor’s office. “Allergies,” I was told and given a prescription for Zyrtec and Flonase, neither of which stopped the incessant sniffling.

Eventually he added a new and equally bothersome symptom: throat clearing. I tried everything to help him, including lots of cough drops, but nothing short of yelling “stop!” would make the cough go away for more than a few moments. I was thankful that when he slept, in a room right next to mine, the constant sounds coming from his nose and throat retreated.

After four months or so, the sniffling and coughing went away, but the neck flailing returned. I was at a loss.

“You’re going to hurt your neck if you keep it up,” I warned him.

“I’m fine,” my son — by then almost 9 — replied.

Then, a month later, a new behavior emerged: forced blinking. He had just recently gotten a prescription for glasses, and I thought the blinking was related. When I took him back to the eye doctor, they did a thorough exam and found nothing wrong.

“He’s probably just adjusting to the new glasses,” the optometrist said.

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This pattern carried on for another year. I trusted the doctors and assumed my son had bad allergies that medications didn’t help, chronic neck issues from the trampoline fall and that he was struggling to get used to his glasses. Everything was so easy to explain away that I had no idea something else might be going on.

By the end of third grade, another pattern emerged, one that wasn’t as easy to tolerate as the annoying noises — my son was getting in trouble in class for talking out of turn or making sounds while the teachers were instructing. This trend continued through a move and a grade change and required multiple parent-teacher visits. I truly thought I just had an overly talkative child.

By the time he turned 11, he’d begun doing something strange that was harder to dismiss. Whenever he’d talk, he’d touch his chin to his chest. At the time, he was slightly overweight, and his neck had a few fleshy grooves that, if he wasn’t diligent about wiping, would get sticky with sweat. When I questioned what he was doing, he said his neck felt uncomfortable, and so I let it be at first. But a week later, as we stood in the living room talking, I noticed him doing something I couldn’t ignore. As he spoke, the left side of his neck clenched, forcing his artery to show through the skin, and at the same time, he grimaced.

“Stop doing that,” I said, alarmed.

“I can’t!” was his reply.

I looked into his worried brown eyes and knew something was very wrong. I gave him a hug, and after he went to bed, I decided to do some research.

On Google I typed “boy, neck clenching, facial grimace” and hit “enter.” The results that popped up on my screen brought everything into focus.

Tourette’s syndrome.

I read through lists of symptoms, like head flinging, nasal and throat clearing, random vocalizations, tapping, exaggerated blinking, facial grimacing, neck clenching and, very rarely, coprolalia — repetitive, involuntary cursing.

I couldn’t believe it. All the years he’d been exhibiting symptoms of Tourette’s, and no one was able to tie them together. Allergies, neck pain, vision problems — all excused as normal behavior by qualified physicians.

The next morning I called our son’s pediatrician and scheduled an appointment. We were seen the same day, and the doctor looked through my son’s record while examining him and seeing the facial tics firsthand.

“I have a feeling you may be right, Mom,” the doctor said to me and suggested a visit to a pediatric neurologist to confirm the diagnosis. What followed over the next month was life changing for my son. The neurologist, the head of pediatric neurology at Walter Reed, instantly recognized that my son had Tourette’s. She explained that many kids will experience the worst tics during puberty, but many will grow out of them once the developmental stage is done.

“You’ll have to wait and see,” we were instructed.

Tourette’s syndrome is not fully understood by the medical community, but it is believed to be a genetic condition passed on from an affected parent. It is often misunderstood by the public, in part due to media representations of Tourette’s being the “cussing disease.” In truth, coprolalia, the repetitive use of obscene language, affects only roughly 10 percent of all patients diagnosed with the disorder. Fortunately my son’s vocalizations never included profanity.

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It has now been five years since my son’s diagnosis, and he has learned to manage his disorder and to educate others. A few months ago at work, a customer asked my son, “What’s wrong with you?” He calmly replied, “I have a neurological condition called Tourette’s. How can I help you today?”

While it’s been hard to watch my child deal with the sometimes painful tics (using a muscle repetitively causes strain and inflammation, which hurts), it’s also been amazing to see his grace and maturity while he teaches others about his disorder.

The next time you see someone making strange faces or noises, try to imagine you’re in their shoes. The next time you hear someone joke about Tourette’s being a “cussing disease,” try to educate them about what Tourette’s syndrome actually is, and by doing so, you’ll be making the world a more accepting space for kids like my son, who have to live in the world with this uncomfortable, highly visible disorder that can be difficult to manage.

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