My little lazy ticcer

A quick check-in to say all is status quo around these here parts. Stink is tired of the acupuncture — says he’s bored of lying on the table when all he can do is think about Mario, Pokemon and create comic books in his head.

Then again, he’s also bored of school. He thinks waiting around for everyone to finish math on their worksheets while he’s done the mental computations is completely a waste of time. He is considered a “slam dunk” by our principal’s office for a GATE program at a local middle school should we choose to send him to a new junior high, but he says he doesn’t want to take the gifted test because he doesn’t want more than ten minutes of homework every night. 

Basically, I’m raising a gifted lazy ass.

Prayers accepted.

PS — If you live in Los Angeles, there is a Tourette Syndrome event happening in Hollywood this evening. It is featuring Michael Wolff — a gifted pianist — who is apparently the inspiration for the movie “The Tic Code.” Am I the only person on the planet who never saw this movie or even heard of it?

Ask Dr. Ticcy: What about relaxation techniques?

Ask_Dr_Ticcy_Logo-238x250Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

Where can I find more information about relaxation techniques?

Thanks,
F.

Dear F.,

Great question.

Relaxation is important for everyone, and can be especially helpful to someone with Tourette Syndrome. Since stress, excitement and anxiety may intensify or fuel tics, relaxation can assist with symptom mitigation. That is why non-pharmaceutical treatments like Comprehensive Behavioural Intervention for Tics (CBIT) and Habit Reversal Therapy (HRT) are often combined with relaxation therapy/techniques.

To learn more about relaxation techniques try:

1. CPRI Brake Shop Clinic

Video: http://www.cpri.ca/videos/Stress%20Techniques%20F.swf
Handouts: http://www.cpri.ca/uploads/section000162/files/handout_stress.pdf
http://www.cpri.ca/uploads/section000162/files/handout_relax.pdf
http://www.cpri.ca/uploads/section000162/files/breathing%20triangle.pdf

2. Dr. Leslie E. Packer’s website “Tourette Syndrome Plus”
http://www.tourettesyndrome.net/disorders/anxiety-disorders/relax/

3.The TSFC Forum

Try threads like these: http://www.tourettesyndrome.ca/showthread.php?7005-Teach-Yourself-Your-Child-Relaxation
http://www.tourettesyndrome.ca/showthread.php?5029-Relaxation-Techniques

4. Asking an Occupation Therapist or Another Trained Professional

Sincerely,
Dr. Ticcy

List of all upcoming and archived webinars, including February 26 on anxiety

THIS WEEK’S WEBINAR

Getting Unstuck: How to Overcome Anxiety & Mood Problems with Behavioral Activation & Exposure

February 26, 2014
Presented by Brian Chu, Ph.D.

Problems with anxiety and depression often can be experienced by the same person, and distinguishing these mood states can be difficult. There are few programs that promise to take a comprehensive but focused approach to helping youth and families address both kinds of problems.

This webinar will describe how evidence-based practice strategies, such as behavioral activation and in vivo exposure, can be used to help pre-teens and teens develop a more active coping approach toward life. An example of this approach evaluated in a group school setting will be described.

REGISTER FOR THIS WEBINAR »
Continue reading

Coprolalia, Part 4: Coprolalia myths demystified

Ken Shyminsky, a former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

In case you missed them, part 1 of this series discussed the nature of coprolalia. Part 2 talked about coping with coprolalia. And part 3, mentioned some action steps you can take when dealing with coprolalia.

Myth: Children with coprolalia come from homes where they are exposed to obscene language and/or inappropriate material. 

Children who have neurological differences with the symptom of coprolalia have brains that work atypically.  Despite often being diagnosed with Attention Deficit Disorder, children with ADD or ADHD are not lacking in attention ability, but their attention works differently than a typical child.

A typical child’s attention manages their environment by attending to what is important, (or what they are directed to), in the particular immediate situation. A child with ADD/ADHD has attention but it most often easily drawn outside the immediate situation and the child is said to be highly distracted.

It is not an attention deficit at all but rather the inability to focus that attention where it should be.  Often attention is drawn to and captured by what is brightest, what is loudest and what is most inappropriate. There attention flickers through all the available stimuli and if it settles it will do so on language, actions and social situations that are most different, most exciting and socially taboo or inappropriate.

Coprolalia: Neurologically Gifted

Actually the diagnosis Attention Deficit Disorder is misleading.  Ask any parent who’s ADHD child can play video games or watch TV for hours but can’t attend long enough to brush their teeth properly.  This phenomena is called hyper focusing and very common in ADHD children. To further add to this, it is easy to focus on things that are interesting, exciting or unusual to us.  It takes mental maturity,  skill and focussed attention to attend to things that we find boring.

So, the stage is set. Continue reading

Not normal and loving it

Conversations with Stink can be considered either terrifying or hysterical depending on one’s mind frame. I choose the second option — it’s so much freer. People who insist in living life at option No. 1 are going to be forever frustrated with Stink’s personality. While those on Rigid Island insist my son is aggravating. Stink lobbies fart bombs and puns their way at such a rapid fire they don’t have much chance. It’s lovely living in Stink’s world.

On that note, here is a conversation we had last week. It involved my need for Stink to learn a life skill, so that he isn’t living with me for the rest of his life, and his insistence that I am horridly unfair that he only gets to play video games on the weekend. We settled on the agreement that we arrived to as such:

Me: You can game 20 minutes/night if you learn an instrument. I’m thinking piano, violin, guitar, drums …
Him: I like the xylophone. Or the harmonica.
Me: Um … well … how about a language. We can go with French, Italian, Spanish …
Him: I have always wanted to learn Mandarin. I love Chinese. Don’t you just love Chinese people and everything about that country?
Me: Sure, Stink. Chinese people are amazing. But what about your hair? What are you going to do with an afro on the Great Wall of China? We will see you from space.
Him: That would be awesome! But you know what I really want my hair to look like?
Me: Short? (Dear Jesus on a pogo stick, please let him say he wants a hair cut.)
Him: I want my hair long. And straight. (Giant pause) And black. Like Violet … from the Incredibles.

Picture me passing out as I picture my trans-gendered ticker in China collecting rubber ducks and passing out camel cards. What are camel cards? HIs Valentine’s Day cards of course. Because “Humphrey” — a silly stuffed animal — is his favorite hump day treasure. Continue reading

Help us support NJCTS so other TS families can get support, too

This is the link to Ally’s walk to benefit the NJ Center for Tourette Syndrome and its amazing NJCTS Children’s Scholarship Program. I can’t tell you how much this organization means to our family. Without them, I don’t know what we would have done. PLEASE help Ally reach her goal. It would mean so much to her. Thank you!

Ally was diagnosed with Tourette Syndrome back in 2009. The start of our Tourette’s journey started on an extremely bumpy dirt road full of obstacles and potholes. Not only did we have to start educating ourselves about Tourette’s, but we were also plunged into the world of education law and 504s and IEPs.

The challenges we faced at times were overwhelming, and it seemed at times insurmountable. Then, one day in desperation I picked up the phone and called NJCTS. The phone was answered by, in my words, “an angel.” She spent more than an hour talking to me.

After the call, I felt like the weight of the world had been lifted off my shoulders. I finally felt like “We can do this.” Over the years, with NJCTS’ help and the wonderful support of other TS moms, our road is now a much smoother, paved road. It’s not a highway and still has its speed bumps and potholes, but when we hit one, we know advice and help is just a call away.

NJCTS has been there with us through the worst of it. I don’t know what we as a family would have done without their guidance and support. So to show how much we appreciate all the work they put in at the Center, our family is walking to help this amazing organization.

I’m asking all my friends to please support us and this wonderful organization. Please help them keep making the TS road easier to travel. No amount is too small!

My Story: “One Twitch At A Time” part 6

Here’s the continuation of my story, which I have posted on here over the past couple of weeks and started on my One Twitch At A Time page on Facebook.

Fortunately, Mok was able to brace himself and avoid getting thrown from the car. He got a huge bump on the head and a nasty raspberry on his arm. I, however, did not fare so well — the back of my head was busted wide open, my nose was split open, my left eye was cut open and almost took out the eye, there was a gash under my right eye, my tail bone was cracked, and there was enough road rash to make any motorcycle rider cringe.

I remember coming to and not being able to see anything as my eyes were crammed with dirt and sand, and I had the worst headache of my life. My dad’s buddy (also named Bill) was one of the EMTs first on the scene, and he recognized the car and must have deduced that I had to have been Toms’ son.

He was talking to me and in usual “Billy Dibler” form, and I was trying to joke around and be a goof — not quite realizing just how close to death I was or even what had even happened, for that matter! I just remember him trying to be calm and keep me from moving too much.

Soon, the ambulance arrived and took Mok and I to the local hospital. I remember being strapped down to one of those boards they use, still not able to see anything, but I felt some packaging from some gauze they had left on my chest, so I grabbed it and blindly made a paper air plane out of it.

Other than that, I really don’t remember the next few hours outside of the fact that they had not cleaned any of the rocks and roadside debris from my head wound before strapping me and my head down. It was becoming very painful, as the rocks were digging into my exposed skull. Continue reading

New approach for those with Tourette Syndrome being tested in clinical trials

Medical researchers are hopeful that a new investigational drug being tested in clinical trials will prove to be an effective treatment for Tourette Syndrome – an inherited, misdiagnosed, misunderstood neurological disorder that presents in childhood and causes involuntary motor and vocal tics.

The new drug, AZD5213, targets the human histamine H3 receptor.  In the brain, this receptor regulates neurotransmitters associated with Tourette Syndrome – including dopamine and histamine. A mutation that affects histamine synthesis was recently confirmed to be the cause of TS in a father and all eight of his children, a finding supported by research in mice.

If approved for treatment of Tourette, AZD5213 might represent an alternative to antipsychotics, which don’t work well in all patients and can cause serious negative side effects.  Discovered by AstraZeneca, AZD5213 has been shown to have a favorable safety profile, with no serious drug-related side effects reported in Phase 1 and Phase 2 clinical trials completed at the time of this report.

“AZD5213 represents an exciting new approach to the treatment of Tourette Syndrome, and we are currently recruiting teenagers suffering from the disorder to participate in the clinical trial,” says Dr. Roger Kurlan, Director of the Movement Disorders Program at Overlook Medical Center’s Atlantic Neuroscience Institute in Summit, N.J.

Dr. Kurlan, who frequently collaborates with the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) in Somerville, N.J., is a leading expert in the treatment of Tourette and is one of approximately six medical researchers involved in the clinical trial.

AZD5213 already has been studied in other clinical trials, including those for Alzheimer’s disease. With Tourette Syndrome, which is associated with changes in brain chemistry that appear to cause the characteristic symptoms of the disorder, AZD5213 might be able to counteract these changes – with the potential to provide symptomatic relief with less of the negative side effects associated with existing treatments.  More than 200 human subjects have already received single or multiple doses of AZD5213, with no serious drug-related adverse side effects. Continue reading

How TS translates in acupuncture terms

Tics seem to be up for a lot of folk I know — including my own kid. More vocals — this time kind of a high-pitched squeak. Not really loud, but it is punctuating his sentences big time.

The other night, while doing math with him, he was doing quite a bit of nodding and squeaking, along with some eye rolls. Did it worry me a bit? Yes. But I also have to say that he just cracked me up. He’s just so funny and charming. We had this entire discourse on the pros and cons of adding up the perimeters of an object.

I wanted to take the area of the invisible square and then do some subtraction, where he came up with some theory on multiplying a side by 10 and then dividing some fraction of the base and mixing it with the hair of a chihuahua and a bald eagle tail feather. (I swear, his mind moves so fast, I can’t keep up with his figures.)

Bottom line: We both got the same answer and had a lot of laughs in the process. I’ll take it, even if this means fighting my instinct to freak out about tics.

One might be led to ask, “Really? Then why do the acupuncture if it’s not working?”

I think that’s like telling a person who has been fat since childbirth to not exercise since they are large anyway. Movement keeps them healthy on the inside and keeps less chunk from accumulating.

Likewise, Stink has TS. As much as I want acupuncture to be a silver bullet, it serves more like a nice balance for his system. Some days are better than others. Martina is not the Tic Whisperer — she is not going to eradicate all symptoms through her magical fingers — not when we don’t 100 percent stick to diet, a perfect sleep schedule, a perfect exercise routine and a no-video policy.

What is your tic management protocol?

I’d love to hear where you are all at in regards to managing tics. Personally, I am really listening to my readers who have TS and encourage me to let my kid be who he is. (As long as Stink remains happy regardless of a few twitches.)

If I ever sound like a broken record, too, I want to know.

You can follow me at Twitter @andreafrazer.

You can find me on Facebook under Happily Ticked Off.

You can e-mail me at HappilyTickedOff@gmail.com.

I’d love to connect with you!

My day job as a writer for Spark Network

You also can find me writing about my faith at Believe.com. Any writers out there or people of faith? Contact me and I’ll be happy to link you from my posts when applicable!