Tourette and its co-morbid conditions: ADHD, OCD, Asperger’s

Posted on March 12, 2012 by AndreaF

Photo taken of my kids at the beach in February. Yes, February. Apparently life exists outside of electronics and it is possible to go screen free and maybe, with any luck, reduce tics. Wish me luck.

In my last post, I talked about my son’s big UCLA Tourette Syndrome follow-up appointment. The doctor took a lot of time with both of us, and the overall consensus was that, yes, Stink has some attention issues. Stink tics mildly to moderately. The doc doesn’t feel Stink needs meds for his tics since he’s not being affected socially or academically.

That all said, meds are not out of the question. We have the option of having Stink tested for free at UCLA for an actual diagnosis of something other than TS — be it ADHD, high-functioning Asperger’s or what-not.

If Stink qualifies for Asperger’s, he can start an eight-week trial through UCLA where they will put him on Intuniv and monitor his blood pressure/reaction on a weekly basis. Of course, this is a blind trial, so Stink might just get a placebo, which means we’re driving in two-hour traffic each way for a sugar pill which is kind of not really on my gluten-free/casein-free/food dye free/eat-everything-that-tastes-like-butt diet.

There’s also the issue of Stink’s blood pressure, which tends to be 85/55. With Intuniv’s side affects being to lower blood pressure, I’m taking a chance that Stink will faint, black out or perhaps just not get up easily in the morning. Continue reading →

California family a success story despite family history of tics

Posted on March 8, 2012 by CherylH

My name is Cheryl, and I live in the Central Valley of California. I am the mother of one son with severe Tourette Syndrome and another with moderate to severe OCD. They are both now in their late 20s but were diagnosed in fourth and sixth grades, respectively.

My husband and I and our sons have survived the journey with many bumps and bruises along the way…but we did survive and even thrive, even though it wasn’t the journey we expected.

All in all, I believe we raised both of our sons to talk intelligently about their conditions to others (especially authority figures who were always questioning them), have compassion for others with differences (both will take the side of an ‘underdog’ in a heartbeat), and know that home is always a safe place for their tics and routines (despite about a year of all of us wearing ear plugs because of a screaming tic phase. :)

Our youngest with TS still lives with us, but he is working part-time and has a girlfriend. I must say that during junior high and high school, we never thought things would improve for him! There are still struggles with several long-time tics (including screaming and coprolalia) and he has what I call “add-ons,” such as mood fluctuation, irritability and depression. But he is doing remarkably well for the places he’s been! Continue reading →

New music app can help re-train the brain

Posted on December 13, 2011 by NikkiP

NOTE: The following is a personalized advertisement of sorts, just for NJCTS, that we at TSParentsOnline thought would be very useful to parents of kids with Tourette Syndrome, especially during the holiday season. Enjoy!

Re-train the brain with SingFit, a revolutionary new music App that was developed by a board-certified music therapist to allow people with autism, Alzheimer’s and other special needs to engage in the health-enhancing, mood-elevating, universal experience of singing.

SingFit’s Lyric Coach system allows users to enjoy a successful singing experience regardless of their ability to read the lyrics to a song, making it the perfect tool for family members, music therapists, caregivers and other health-care professionals.

Scientific research reveals that singing engages the brain in unique ways that increases the ability to focus, enhances the immune system and reduces stress. Most recently, singing therapy has captured headlines surrounding Congresswoman Gabrielle Giffords’ miraculous recovery of how music therapy has played a huge role in rewiring her brain.

And while there are no clinical studies available that speak to specifically to the impact of singing on Tourette’s Syndrome, there are many very high-profile anecdotal cases of the impact of making music on Tourette’s — most notably the case of a young man whose Tourette’s tics disappear when drumming, as documented by Dr. Oliver Sacks for the Nova documentary Musical Minds. Continue reading →

Top 10 Tourette Syndrome Myths

Posted on December 8, 2011 by ShelbyC

Shelby Crockett has been a paralegal for nine years and owns the site How to Become a Paralegal. Her site helps students find the right paralegal school.

Those who have Tourette Syndrome are likely to encounter loads of misinformation and those who don’t understand the disease on a regular basis. What Tourette Syndrome is and is not can be as confusing for both those who live with it as those who do not. To help paint a clearer picture, we have gathered a few myths surrounding TS.

More swearing – It is a common myth that those with TS swear often and uncontrollably. In reality, only a small percentage of those with Tourette’s Syndrome have obscenity specific outbursts. In fact, there is a special name for it: coprolalia.
They are mentally challenged – Tourette Syndrome is not like Down’s Syndrome or cerebral palsy. It is a neurological disorder that is characterized by involuntary movement and speech tics.
It is extremely rare – It is estimated that every 1 in 100 children suffers from Tourette Syndrome, a higher number than those with autism. Most of them go undiagnosed and misunderstood. Continue reading →

Complex set of tics making Dylan’s life much more difficult

Posted on November 23, 2011 by JuliaG

If you ask him, “How are the tics? Are they bothering you?” he will shrug and say, “I don’t know,” but that’s not quite true. He’s 13 – the tics are intense and he can be driven to tears at times when he feels powerless to control his body or his thoughts. If Tourette Syndrome was his only problem, though, life would be much more manageable.

My son Dylan has a combination of challenges that make life difficult for him and those around him. Our first concerns, when he was in preschool, were social problems. The preschool teachers were worried because he didn’t play with the other children. We suspected he was on the autistic spectrum, possibly Asperger’s because of his advanced verbal skills. A pediatric neurologist suggested “pervasive developmental delays.” His lack of social awareness definitely complicates things since he doesn’t care that his behavior bothers other people.

We took Dylan to so many doctors, trying to find answers. We were concerned about his lack of understanding of social cues and about his attention and impulsivity problems. I read that 70 percent of children with Tourette Syndrome also have ADHD. He is one of those. Honestly, the ADHD symptoms cause a lot more problems in school and in the world than the tics. In second grade, he got pulled out of PE for sometimes wandering away from the group and other times spitting on, punching and pushing other children.

We have been through the roller-coaster of medications. There were those that helped with attention but made Dylan unable to eat or sleep. In sixth grade, medication made him less impulsive but he was falling asleep in class and struggled to walk half a mile. Some meds seem to control the tics a bit, but I sometimes wonder if the medications do much good. The way to test it is to take him off – then the tics and impulsivity go through the roof. I feel like we’re medicating him to keep him out of trouble. He tends not to hurt other students when he’s on ADHD meds. Continue reading →