For the past two years I’ve noticed tics in our older son. During his yearly check-ups I would mention it to the doctors and they would more or less brush it off as “normal” behavior. To me it was a red flag. Why, because my brother was diagnosed with Tourette syndrome around the age of 6. My brother’s TS is on the milder side with mainly non-verbal tics however he does have one verbal tic which is clearing his throat. The verbal tics (vocalizations) that include shouting, barking or obscene language is very uncommon actually.
Tourette syndrome or TS is a neurobiological disorder characterized by tics–involuntary, rapid, sudden movements and/or vocal outbursts that occur repeatedly. Genetic studies indicate that TS is inherited as a dominant gene, with about 50% chance of passing the gene from parent to child. Sons are three to four times more likely than daughters to exhibit TS. The very unfortunate thing is no definite cause has yet been established in finding the cause or cure for TS over the last several decades however considerable evidence points to abnormal metabolism of at least one brain chemical called dopamine.
Over the past few months I’ve seen an increase in our sons tics which include raising his eyebrows, blinking, clenched jaw and a shoulder movement. The tic’s are typically more noticeable when he’s upset or tired and are intensified after playing a computer game or iPad/iPhone game. After a recent in-depth conversation with my brother about TS I was even more certain that our lil man had “it”. I cried my eyes out when I got home. It was my bad genes! I felt so guilty I had passed this onto our son. After speaking with my husband, we were in agreement that it was time for action. I called the pediatrician and remained firm that I wanted our son tested by a specialist for tics.
This past week we took our son to a Neurologist. I requested an appointment with the Head of Neurology at one of the major Orlando hospitals. Because there is no “test” for TS the doctor simply observed our sons behavior and asked my husband and I several questions regarding our son. The conclusion was he has a tic disorder. I flat out asked him if he thought our son had Tourette’s and his reply was, “there is no benefit to labeling it for now”. His reasoning being that there is no cure for TS and because we have not encountered any issues or barriers regarding our son and his tics. I exhaled. A tic disorder somehow sounded better to me.
We also learned that there are several associated conditions including ADHD/ADD, OCD and learning disabilities. My husband has worked in the school system for several years and has come across many students who were undiagnosed with ADHD and ADD and had them evaluated. He’s mentioned to me before that our lil guy has ADHD and I always reasoned it out to our son being an excited kid who sometimes doesn’t listen. That sounds like any 4-year-old to me! The Neurologist seemed hesitant to “label” our son with anything, but did imply that it was evident our son had several of the characteristics of ADHD. He sent us home with a pamphlet that offered a scoring system and based on the answers we supplied it reflected where on the ADHD scale our son lies.
Of course the doctor talked meds with us, but my husband and I had discussed our stance on medicating our child before going in and we both agreed: NO. The doctor respected our decision, but rattled off several statistics about children who do not get ADHD “under control”. He also said that if the tic disorder becomes an issue socially (bullying) or the ADHD becomes an issue education-wise we are welcome to have our son re-evaluated. I asked for constructive non-medicated ways of helping our son with ADHD and he directed me to their website for examples. Not to push any buttons here, but I’m for finding a solution, not masking it with medication. That’s just my opinion and other situations may differ from our sons.
All of this news has been a bit overwhelming and quite upsetting for me. 🙁 I don’t want my son to have challenges, especially since bullying is a HUGE issue in schools. I am glad bullying is finally being recognized and action is being taken, but I don’t see enough change to feel comfortable just yet. On the flip side, our lil guy hasn’t noticed his tics or complained about them so possibly his 4-year-old school mates won’t either? He begins pre-k at the end of the month so we’ll see how it goes….