Pediatric residents learn more about Tourette Syndrome from teens

Posted on April 13, 2012 by TSParentsOnline

Drew Friedrich and Sarah Ethridge had a lot to say at the New Jersey Center for Tourette Syndrome’s patient-centered training April 9 at Goryeb Children’s Hospital in Morristown, N.J. And the pediatric residents to whom they spoke absorbed every word they spoke.

The packed room of pediatric residents learned more about Tourette Syndrome in 1 hour than they did during their entire time in medical school or during on-the-job experience. NJCTS’ patient-centered trainings are, simply put, THAT effective. But don’t take our word for it. Listen to what the chief pediatric resident had to say:

“I didn’t realize that you could actually suppress the impulses of the tics. That was interesting information for me,” said Angela Mukherjee, the chief pediatric resident at Goryeb. “I think we got a really good insight into how Tourette affects children on a daily basis and the struggles that they encounter. In the textbook, we learned what Tourette is and how to treat it, but it’s different in person. It was great. It was really educational.”

NJCTS’ story about the training can be read by clicking here, but we at TSParentsOnline would like to provide you with some exclusive behind-the-scenes quotes and information — straight from the parents, Donna Friedrich and Carol Ethridge, who were at the training with their kids! Continue reading →

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 →

Asperger’s? ADD? Meds? Oh, my!

Posted on March 2, 2012 by AndreaF

After waiting five months after our initial Tourette’s appointment with a top UCLA doc, we finally had our follow up on Monday. I was relieved, and unsettled, about the final outcome.

The good:

Stink is extremely well adjusted and unplussed by his “mild to moderate” tics.
Stink is clearly very bright.
Stink has a great sense of humor and super happy with himself.

The bad:

Stink has an “impressive” ability to talk about one subject at length, regardless of whether or not someone is interested in hearing about it.
He could be doing sooooo much better in school if he were more focused.
There is a decent possibility that he is showing signs of ADD and high-functioning Asperger’s Syndrome.

I shouldn’t look at stuff as “good” or “bad.” They just “are”. By putting my emotions on it, I’m not helping to process anything. I need to learn to detach. But come on, I can only grow so much at a time. Moving on. Continue reading →

A Tourette Syndrome mother’s long journey, part 2

Posted on February 6, 2012 by ChristinaD

This is part 2 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son. You can read part 1 here.

When we got a referral to a neurologist, Dr. C., he spent 15 minutes with us and sent us home with some old-school meds that sent Spencer’s tics into overdrive. I called the doctor in urgency and explained Spencer’s tics and then told him, “It is like he has Tourette’s.”

It is then that the doctor replied, “well, yes, he does have Tourette’s.” I was shocked and upset that he never mentioned this to me in his office. He just said it matter-of-fact, even though there was no known diagnosis.

I immediately went online and started researching Tourette’s and took Spencer off of the meds the doctor prescribed. After reading the facts, I was in tears. I was crying because of all the years spent not having an answer. All of those days I kept telling my son, “Stop doing that” because I did not know better.

I felt guilt because with my ignorance I had this dumb idea that he might actually stop if I kept bringing it to his attention. He also got in trouble at school because his teacher thought his tics were just him acting out and being disruptive. I was ignorant about Tourette’s because I was like the general population that presumes that Tourette’s is just complex tics and cursing.

I was relieved to finally have something that fit and not upset like some parents when their child is diagnosed with Tourette’s. After so many years of what we went through, I finally could exhale Continue reading →

A Tourette Syndrome mother’s long journey, part 1

Posted on February 3, 2012 by ChristinaD

This is part 1 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son.

Hello, I am the mother of a 14-year-old son, Spencer, who has Tourette Syndrome. Unfortunately, we had to take a bumpy road before this diagnosis. I could write a book on our journey so far, and I still don‘t have it figured out.

It has never been easy, including the beginning that started with the worst case of Hyperemesis, Pitocin, 24 hours of labor and hemorrhaging to get him into the world. Nursing was a challenge, he didn’t sleep much, had some ear infections and was sensitive to loud sounds.

He was otherwise very healthy and always in the 95 percent on the height/weight charts. He walked at 15 months and was running within the end of that month. He had an advanced vocabulary and figured out how to open up the most advanced cabinet locks by his first birthday.

He had an atypical febrile seizure at 14 months old that was severe enough to have him admitted, but thankfully all the tests came back positive. As a toddler, he was very impulsive when it came to playing with other children and it was not long until we were outcasts in play groups. It is then that I started to feel isolated. Continue reading →