I am a new parent to Tourette Syndrome. My 7-year-old son was diagnosed with TS on November 15. He developed a loud cough in September. I took him to his pediatrician, and at that time he was diagnosed with cough variant asthma — a lung disorder that presents with a cough in children. He was given steroids and breathing treatments.
After taking the meds, the cough never completely went away, but had decreased enough that he could return to school without it being as disruptive.
In mid-October, the cough returned with a vengeance. It was happening repeatedly, but with forceful body jerking. I took him back to the pediatrician, and we were referred to an allergist. After seeing the allergist, we found out that he is allergic to trees, grass and dogs. We live in Tennessee, where the pollen is horrible!!!!
He was placed on more meds and breathing treatments. A week after seeing the allergist, he seemed to get worse to the point that I took him to the emergency room. He was coughing repeatedly for 2 hours. The docs there just administered more breathing treatments and instructed us to return to our PCP in the a.m.
When we got to the pediatrician the following morning, she instructed me that he needed to be homebound from school because the cough was that disruptive, and he had already missed three weeks of school from the cough and fatigue associated with the cough. She also told me that she was referring me to a neurologist. I’m a nurse, so when I heard the word neurologist, I immediately went into panic mode!
After getting labwork, CT scans, MRI with sedation and an EEG, the diagnosis was discovered. It felt like a bittersweet moment. I was happy and relieved to FINALLY know what was making my baby boy sick, but sad because of what society thinks about TS and the challenges that he may face.
His case is extreme according to the neurologist since he’s unable to attend school because of his vocal tic. We’re trying to get him on the best medication regimen to decrease the tic so he can return to school. I’ve researched to find a support group in my city without any success.
I need to interact with people who can empathize with my situation. This noise just came out of nowhere. My family and I are all adjusting to our new situation. It’s difficult to go out in public because of the stares. The noise started as a cough, then went to a sneeze and now it’s a VERY loud yell.
Oh, I forgot to mention that when this all first happened I had a 1-month-old daughter. She’s 4 months now, and she’s a little more calmer now when he makes the noise. Some days are more overwhelming than others since he’s home with me and I have my daughter at home also.
So, again, I’m searching to interact with people that can share their experiences with me and vice versa.