Introduction to TS.....As we're now halfway through TS Awareness month.

[toddlermominoma]

We're halfway through a month long campaign for the TSA, family members and people with TS to advocate and educate the rest of the world. I'm sure that most of you will see this and skip over it with a passing glance. So, let me make this a bit personal. My son, ONLY 5 years old, has Tourette Syndrome. He is a good boy, a bright boy. He has to suffer through the pains his body causes him over it, the looks from the general public, the ignorance that the world deals him and one day will suffer at the hands of his peers for it.

Tourette Syndrome is not a behavior problem or an excuse to misbehave. It is a real neurobiological disorder. That is believed to be caused by Neurotransmitters — chemicals in the brain that carry nerve signals from cell to cell. Dopamine in particular. It is NOT contagious. It is thought in some cases to be genetic, while in others can seem to appear for no reason. At this point there is no TS gene identified and there are many theories as to why a child may get it.

TS, though publicly portrayed in the media as the swearing disorder, is in most cases not like that. In fact, less than 15% of reported cases of TS manifest that particular tic. There are some with TS that can go most, if not their whole lives with no diagnosis! In fact it goes undiagnosed so often, that an exact figure as to the number of individuals with TS in the US alone, is a best guess. Roughly standing around 200,000 at this point in time.

Boys in particular are 3x more likely to get TS than girls, pointing to a genetic component.

TS is such an obscure disorder to most of the public and world that there is not enough research put into it. Where as most other disorders there is some definitive test to affirm a diagnosis, there is no such test for TS. Unless a family history of TS, it is a wait and see game. A diagnosis is usually made by observation for at least 12 months. To weed out transient tics or P.A.N.D.A.S. With symptoms usually appearing between 5 - 18 years of age.

There is no cure and limited options for those with TS. Medications are only given if the tics interfere with daily life. Even then, it's usually medication for comorbid disorders such as ADHD, OCD, ODD,depression, anxiety etc. None of which completely help and can often times have side effects that are not manageable to the person or family involved. It can take years to effectively find a good combo of medications to help them. Even the FDA has no real set limits on the dosages prescribed for TS patients, as often time they adjust to the dosage and need to increase it. Or there is no real funding to explore what works.

I'm sure most of you will ask about tics, I know I had no idea before all this. Tics can change periodically, in frequency, number, type and severity. Even disappearing for weeks or months at a time. They can be different for everyone, though there are some that seem to be quite common. Common motor tics can be blinking, head jerking, shoulder shrugging, and facial grimacing. Common vocal tics are things like, throat clearing, and DW's favorites, sniffing, coughing, breathing oddly or loudly.

Over time most of children with TS will get better though, as they progress through teenage years, some have a particularly rough period. In a small number of TS individuals, the TS symptoms seem to remit as an adult.

Children with TS are just as smart as the average population, some are even not only truly gifted but, are brilliant. Children with TS may often suffer through problems academically only from either attention deficits or issues that a particular tics may present.

Individuals with TS are not an someone else. They are not something to be stared at. They are human beings, children, mothers, fathers, brothers and sisters. They are computer engineers, teachers, newspaper men, scholars, comedians, athletes, actors....


TIM HOWARD - Once known as Tim Dawg, Howard managed to become the goal keeper for Manchester United of England despite his tourettes Syndrome. It was an everyday battle but he kept it under control, especially when he was to be catching and blocking 65 miles an hour curve soccer balls from the best players in the world. Tim says it's just a battle of the will, he just constantly fights what his mind tells his body to do.

JIM EISENREICH - James Michael Eisenreich is a former major league baseball player utility player with a 15-year career. He played for the Minnesota Twins and Kansas City Royals of the American League, and the Philadelphia Phillies, Florida Marlins and Los Angeles Dodgers of the National League. Eisenreich has Tourette syndrome (TS) his condition caused him to go on to the voluntary retirement list between 1984 and 1987 while he was undergoing treatment.He runs the Jim Eisenreich Foundation for Children with Tourette Syndrome which they founded in 1996. It helps children with TS to achieve personal success.

DAN AYKROYD - Aykroyd was born on Dominion Day at the Ottawa General Hospital in Ottawa, Ontario, Canada. Dan was diagnosed with tourette's and asperger syndromes at an early age, but the symptoms seem to have disappeared when he was around 14. The diagnosis of Asperger syndrome did not exist in the 1960s, when Aykroyd was a preteen.

WOLFGANG AMADEUS MOZART - though TS was not a diagnosis back then, it is believed he may have had it. It has been documented that he was hyperactive, suffered from mood swings, had tics, and loved made-up words. Despite these behaviors, we will probably never know for certain whether Mozart had TS.

[kjrn79]

May. 27, 2010 at 5:05 PM

I have never met anyone with Tourette's and I find your writing very informative.   I have done some reading about the condition before.  I'm glad you have a diagnosis.   God Bless your son and your whole family.