Last weekend our friend's son Matthew prepared a remarkable dinner that tasted and smelled like it just came out of the kitchen of a five-star restaurant. He shopped for all the ingredients himself then spent a good part of the afternoon prepping. Matthew loves cooking and hopes to eventually open his own chain of gourmet vegan restaurants in Manhattan.

Although now he is most definitely a young man with a plan, Matthew was an active RiverDell 12-year old when some of the kids began calling him, "The Twitch."

Along with the nickname, they mimicked him by hopping on one foot, assuming strange facial expressions and furiously licking their own lips. The kids were mirroring back at him the arbitrary and often inappropriate gestures Matthew frequently made.

"My heart was breaking," his mother Pat says. "They were basically telling Matt that this part of him was unacceptable and worthy of shame."

"We had noticed some of these things ourselves," his father James adds. "But we thought they were just odd habits, which over time could and would be broken. When the other kids began tormenting him we realized there was definitely a reality other than what we'd been telling ourselves."

After their pediatrician recommended them to a neurologist, Matthew was diagnosed with Tourette Syndrome. According to the National Tourette Syndrome Association (TSA): "Gilles de la Tourette syndrome (Tourette Syndrome or TS) is a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years. Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year. 

The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk.  These tics are frequent, repetitive and rapid.  The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs."

"We were frightened for Matt," his father remembers. "And for us. We wanted to be able to afford whatever treatment he needed and we also wanted him to be able to look forward to a full, independent life." 

"We knew nearly nothing about Tourette Syndrome," Pat recalls. "Other than that it made some people suddenly scream out curse words or make barking sounds. We had to educate ourselves about the complexities of the condition and the different roads that might be taken."

"We studied up quick," James adds. "And we found that being flexible was essential."

Matthew was put on a popular medication that is intended to help some of the symptoms he was experiencing, but he developed unpleasant side effects which included dry mouth, joint pains and dizziness. Eventually they found a medication which worked well.

Pat began researching dietary changes and supplements. Sugar was limited, as was caffeine and artificial sweeteners. After seeing an allergist a number of foods were removed from his diet as well, and the entire family began eating more fresh vegetables and fruits.

As the years passed, Matthew has tapered down in the dosage of medication he consumes daily. After initially being angry at some of the dietary changes his parents suggested, as time passed he took a great interest in becoming a vegan. He and his family understand that what works for him  now might not always work, so they remain open to changes in medication, diet and lifestyle.

Perhaps most important, they accept the facial grimaces and random clicking sounds their son sometimes makes, just as he accepts them....as part of who he is (not ALL of who he is!)

Tourette Syndrome impacts different people differently, and what is good for one patient might have little impact on another. Frequently tics become milder or actually go away entirely during adulthood. The actual cause is unknown, as is a singular cure that would help everyone equally. For most, management of symptoms is the primary goal.

"I just go on with my life," Matthew says simply. "I have a lot of things ahead of me that have nothing to do with having Tourette Syndrome."

Judging by the delicious dinner he so confidently whipped up, running his own chain of vegan restaurants may well be one of those things.