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 →

Son battles hard, functions flawlessly under duress

Posted on February 10, 2012 by EllenT

My family and I have been experiencing some extra stress over the past few months. As many people know, life can get more and/or less complicated at any given moment — especially in families with Tourette Syndrome.

My updated story has ups and downs, twists and turns and a miracle.   As I have mentioned before, my son, B. has Tourette’s-plus and Crohn’s Disease, and is presently slowly working toward a college degree.

His dad and I have made extra help available to him for his organizational needs and academic support. Because he is incredibly motivated and positive, B faces the daily struggle of a rigorous college program — even though just getting himself to classes on time can be an ordeal.

Executive functioning is a huge challenge for him at all times. But on Jan. 7, he showed us how amazingly he functions in an emergency.   Continue reading →

A Tourette Syndrome mother’s long journey, part 3

Posted on February 7, 2012 by ChristinaD

This is part 3 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 and part 2 here.

The school district my son is in, apparently like many others, are resistant to accommodations. I had to push and become less than favorable in order to get more support at school for him.

The staff at Spencer’s school were resistant to any diagnosis because they did not want to deal with him. The reasons why people go into education has been lost with many teachers, who only want to work with those who fit into that “perfect student” mold.

Even though my son had the Tourette’s diagnosis, I still had a lot of resistance when it came to getting my son accommodations he needed. Even though it is mandatory to follow an IEP, it takes the parent staying on top of it to make sure it is being followed. I had a special IEP meeting and was thankful to have Susan Connors speak on my behalf via speaker phone.

The principal actually had the nerve to call Susan beforehand to try to get her to convince me to move Spencer to another school. Susan informed me of this beforehand in a private call. I could not believe the audacity to do this, especially given Susan was advocating for my son! Continue reading →

Everyday tasks are insurmountable obstacles

Posted on November 18, 2011 by MissyB

Why is everything a fight with her?

This was our daily, sometimes hourly, lament with Bean. She would fight having her teeth brushed, fight getting her face washed, fight getting in the car seat, fight getting strapped into the stroller. Fight getting dressed; fight getting undressed, fight leaving home; fight returning home. Everything. Always. It seemed that nothing was ever easy with her.

When I witnessed other kids happily going through their daily routine of getting ready and out the door, my jaw would drop to the floor. And these parents, they didn’t have to use the constant creative tactics I did. They just went about their business.

No constant singing of songs to make the tasks fun and inviting. No imaginative turning-their-child’s-mouth-into-a-dollhouse-and-cleaning-all-the-furniture-inside tooth brushing games. No turning on Dora just so they would be distracted enough that mom could quickly slip on their clothes without them even noticing. No funny noises, funny faces, crazy dances, promises of rewards. Nothing. Despite all my research, I could not figure out why Bean had such a hard time with these simple, everyday tasks. Continue reading →