There’s not enough data for accurate estimate of Tourette Syndrome incidence

Hot off the presses is “Prevalence of Tic Disorders: A Systematic Review and Meta-Analysis,” an article published in the journal Paediatric Neurology by several physicians, including Dr. Tamara Pringshiem.

Dr. Pringshiem is a member of the Tourette Syndrome Foundation of Canada’s Professional Advisory Board. The TSFC community has the chance to hear Dr. Pringshem speak at the upcoming National Conference in October, when she will present on the latest treatment guidelines for TS.

Dr. Pringshiem’s recent article focuses on the problem of underdiagnosis of TS and other tic disorders. The underdiagnosis of TS is a complex issue. Many people with TS are unaware that they have the condition. One study even puts the percentage of people who do not know they have TS at 30 percent.

Tics can, and often are, suppressed or disguised in public. Additionally, they often decline with age. On top of that is the problem of people hiding the fact that they have TS because of fear of social stigma. All these factors combined make it extremely difficult to get an accurate estimate of the prevalence of the condition in the Canadian population.

Rather than relying on one or two studies to establish the current prevalence, Dr. Pringshiem and her colleges examined several different incidence studies in order to obtain the most accurate estimate possible. Their main findings were: Continue reading

My son is getting mistreated badly in school and is depressed

I need help. My son has had Tourette Syndrome for 3 years now. He is 12 1/2, and I’ve recieved no help or support. The West Elm School was very nasty to my son and has not even shown an interest in helping him. He has been in his room most of the summer with tics and sleep problems.

I don’t know what to do. Because of the actions of people at the West Seneca and West Elm schools in New York, I’ve found that my son has become depressed — and I don’t blame him.

They told me that because my son says things that are not acceptable, it will not be tolerated! Are you kidding me?! It’s like a sneeze — you can’t help it! His tics can get bad. I hope someone reads this and tries to help us. We need a nonprofit lawyer to help, if anyone knows of any. Thank you for reading.

A little advice about medication for tics or focus

This one’s for moms and dads thinking about starting meds for tics or focus: If you can hold out until your kid is at the age where they really know their bodies and can speak about the effects, it’s super helpful. Sure, a few years of hyperactivity or trying out diet and supplement techniques are a pain (but yes, they really help in managing symptoms), but it’s a great baseline. If you start meds at 4, when they are 9, how will you know what their true personalities are?

Some folks absolutely need meds because of extreme ADHD or extreme tics. Of course, there is nothing wrong with that. It’s simply my theory for parents of kids who have medium to mild tics/focus/hyperactivity. And trust me: nothing helps build a parents’ tool box of character, patience, grace and forgiveness than learning to accept and nurture a child who isn’t a perfect cookie cutter kid.

Until next time, hug that ticker of yours today!

3rd annual Youth Advocate 5K introduces official timing by CompuScore & new “A-Team”

Are you ready to stand up and walk the walk? Join the “A-Team” – youth advocates for kids with neurological disorders – to promote awareness, acceptance, action and advocacy at a day of fun and empowerment for kids, by kids and about kids.

The 3rd annual Youth Advocate 5K Family Run/Walk, to take place Saturday, November 3, at Borough Park, is being expanded from its previous New Jersey Walks For TS format to an official 5K with timing by CompuScore. Registration is open now, and a reduced rate cost of $22.50 will be available for online registrants through Oct. 31. Registration after Oct. 31 and on the day of the event will be $25.

Joining the “A-Team” at the 5K will serve two very important purposes: supporting children and families with Tourette Syndrome, ADHD, OCD, anxiety disorders, Asperger’s Syndrome and other neurological disorders; and strengthening the statewide education outreach and peer advocacy programs of the New Jersey Center for Tourette Syndrome & Associated Disorders.

This year’s event also will feature a family picnic immediately following the 5K. Participants should bring a lunch and comfortable chairs, and stay for fun, music and entertainment. Check-in on November 3 begins at 8:30 a.m., followed by warm-ups at 9:30 a.m. and the 5K at 10 a.m.

To register for this year’s event, please visit our official New Jersey Walks For TS registration page. To donate or fundraise, please visit our official New Jersey Walks For TS fundraising page. For more information about this event, including our flyer and brochure, please visit our website.

Poetry: “Light at the end of the tunnel”

I wrote this about 10 years ago, shortly after my son was diagnosed. We’ve come a long way since then. At 17, he barely tics, the RAGE is gone and he’s doing well in school. I hope that this shows that you are not alone in the struggles that you face. Know that there is light at the end of the tunnel….

TS
“Why do you keep on clearing your throat? Are you feeling sick?” I would say.
And so, it continued…again and again.
Day after day after day.

Then, one day it stopped…and then you began
shrugging and jerking your head.
And then, you started hurting yourself
and picking your nails ’til they bled.

The blinking is hard; it’s like a strobe light
is flashing in front of your eyes.
I can’t seem to calm you, when you get upset,
no matter how hard I try.

Mothers all want to take care of their kids
and give what they need everyday…
to kiss all their boo-boos, whenever their hurt,
and make all the pain go away.

Oh, how I wish I could magically fix
all the things that are so hard for you.
I’m so sorry to say, my sweet special child,
that is something I just cannot do.

But, I’ll always be here, whatever you need.
I’ll give comfort when your poor heart aches.
And I promise I’ll always give you my best,
though I know I will make some mistakes.

Remember, we’re in this together
and through the years, we both will grow.
I know you’ll do fine, my dear child…
and I love you, more than you know.

Connecting with other parents is vital with Tourette Syndrome

Hi!  I never thought about participating on the blog before, but ran across it today and thought that it sounded like a good idea. As a parent of a 17-year-old boy with Tourette Syndrome, my experiences over the years might serve to help parents deal with a new diagnosis.  We have been through much, but survived.  Our son is doing well now.

Over the years, the New Jersey Center for Tourette Syndrome has offered a lifeline to many. We have taken advantage of the wonderful family retreat weekends at Camp Bernie and found that networking with other parents there has proved a valuable resource.  We found our son’s doctor through another parent at camp.

Thank you for providing a forum through which parents can connect and be comforted. I will look forward to participating.

A poem I wrote for my son

Please Tourette’s let his body have some peace tonight.

Please Tourette’s, let him just lay still for once.

Please let him know a state of relaxation, a place of calm predictibility, just for a moment before he goes to sleep.

Won’t you take a break, for just a while — so he can take a break for just a while — before you resume your endless control of his body?

Or better yet, how about you leave forever, and take the bullies, and starers, and whisperers with you, and let this one be free?

Yes, that I would love to see.

Does BOTOX help with tics?

Recently, several Tourette Syndrome Foundation of Canada members asked National Office staff about the use of BOTOX injections as a tic treatment. In response, the TSFC did some research and here is what we found.

In the current clinical guidelines for treating Tourette Syndrome, BOTOX has a “weak recommendation” due to the low quality of medical evidence in favour of the treatment.  The authors state that:

While the consensus group believes that botulinum toxin injections are generally safe and without systemic side effects, we recommend using this treatment in only very specific situations. Botulinum toxin injections should be considered for the treatment of severely disabling vocal tics, such as coprolalia, or very distressing motor tics involving the upper face or neck. Further, only an experienced clinician should administer botulinum toxin injections.

What do studies about the treatment indicate?

In 2000, an article published in the Archives of Neurology called, “Botulinum Toxin in the Treatment of Tics,” evaluated the effectiveness and safety of BOTOX injections in the treatment of tics in patients with TS. Continue reading

Writing a book … here’s part 3 of the introduction

NOTE: The is the last of three parts introducing AndreaF’s book about her life as a mother of a child with Tourette Syndrome. You can find the first two parts here and here.

The following isn’t really part of the book, it’s more a question that has been posed to me about the introduction and some of what follows.

A friend of mine, who does not have a child with Tourette Syndrome – and who has been reading my book from Intro thru Chapter 5 – said: “I love it, but it feels a bit like you’re giving away the whole book. I mean, don’t you want to keep some things a bit more hidden to hook people?”

She admitted she was unsure about this advice. She has given other notes she has been adamant about, so I trust her when she says she could go either way on that note.

In my opinion, since this book is geared a bit toward self-help, it seems that parents who are hurting might want an intro that immediately gives them hope. They might want to see, from the get go, that yes, marriage can be strained. Fears are normal. Pity parties happen – but there is relief!

Do you think I gave away too much? I mean, do you feel like you read the book or is it enough of an appetite wetter that you want more. Because trust me – there’s a heck of a lot I have not said. I’m just giving folk the overall theme: That TS isn’t the end of the world.

Thoughts?

Writing a book … here’s part 2 of the introduction

NOTE: The is the second of three parts introducing AndreaF’s book about her life as a mother of a child with Tourette Syndrome. You can find the first part here.

Insanity is often described as hitting your head against the wall over and over and expecting different results each time. I would agree with that definition, but I didn’t see myself as crazy. I saw myself as head heels in love with my son who would do anything to alleviate his ails. And it’s hardly like I was hitting my head against the wall the same way every time. I used a helmets to soften the blows. I went about slamming against the wall with different intensities. From homeopathic visits, dietary changes, acupuncture, neurologists, online ordered vitamins, support groups, books, habit reversal training, psychologists and psychiatrists and ultimately medication, I did everything in my power to “normalize” my son.

For a few weeks, even months at a time, my efforts seemed to pay off. Sure, I had bad hair from exhaustion and wearing all those helmets, but sometimes those tics would dissipate. But just when I’d let my guard down, they’d come back. And then the insanity of head banging would begin again. It was exhausting, and those bumps hurt, but until I got rid of those tics, I’d simply have to live with the pain.

Peda Chodron, a world renown Buddhist teacher who practices awakefulness, fearlessness, and gentleness, speaks often about the futile attempts of changing others to make oneself feel better. In a lecture entitled “This Lousy World,” she reveals a list a mile long of things that annoy people to no end, including, but not limited to, the weather, the government and scent assaulting perfume. She then offers an analogy borrowed from another teacher: “It’s like being barefooted and walking across blazing hot sand or across cut glass or in a field with thorns and your feet are bare and you say, ‘Oh, this is really hurting. It’s terrible. It’s too sharp. It’s too painful. It’s too hot. Do I have a great idea! Everywhere I go, I am going to cover it with leather. And then it won’t hurt my feet anymore.’ That’s like saying, ‘I’m going to get rid of her and get rid of him and get the temperature right, and I’m going to ban perfume in the world and there will be nothing that bothers me anywhere. I am going to get rid of everything – including mosquitoes – that bothers me  anywhere the world, and then I will be a happy, content person.’ ”

Chodron could have replaced “him” and “her” and “mosquitoes” with the word “tic” and describe me 100 percent. In the aftermath of a devastating and unexpected diagnosis, I was too emotional to do the logical thing. I wasn’t able to see past my anguish and simply wrap leather around my feet – instead of the desert – and walk pain free across a desert of uncertainty.

If only someone out there could have told me what I know now: That Tourette isn’t a death sentence. Not only would my son go on to defy any ridiculous stereotypes of what it means to have a tic disorder, but he would develop a soul far stronger and richer than I would have imagined. His ability to transcend his label was not due to thriving despite uncomfortable and dire circumstances, because my son never saw his disorder as tragic. Ticking was just a small facet of who he was. Instead of being Stink, the kid with Tourette Syndrome, my son quickly showed me, and the world, that he was silly Stink, the kid who cracked jokes and loved karate and told fabulous stories and read everything he could get his hands on and made babies laugh and adored his sister and held my hand even in the third grade and was fearless in tumbling class and thought each one of his three biological grandmas were the most awesome women on the planet and oh, in addition to these endearing characteristics, he had Tourette Syndrome.

As a woman who had lived her entire life judging herself on what she did, instead of who she was, it took a long time for Stink’s philosophy to sink in. I still struggle with it, but like Chodron’s desert analogy, I have learned to accept that I can’t change the tics, but I can change myself. This includes letting go of expectations of what I want, and becoming more comfortable with what is. And some days, when he’s ticking a bit more than I’m comfortable with, I still freak out. But instead of judging myself for my reaction, I am willing to look at myself with compassion. Like my son’s face, that occasionally decides to eye roll or nose scrunch, I’m not perfect. I am perfectly human. And that is enough.

One of my favorite all time stories about special  needs is called “Welcome to Holland.” I took the liberty of adapting it for my experience with Tourette.

One day a family of five boarded a plane headed for London. It was winter, which meant their luggage was filled with sweaters, thick wooly socks, mittens and scarves. The mother, who had dreamed of this vacation ever since she had children ten years prior, had planned out the entire trip in painstaking detail. They would have tea near Buckingham Palace after shopping at Harrods. They would tour the Tate and take a family Christmas  photo in front of Big Ben.  They would catch a show in the West End and go to mass at St. Paul’s.

After two hours on the plane, she looked over at her three children who had magically fallen asleep in the seats between herself and her handsome husband. She grabbed her mate’s strong hand, smiling at how perfectly everything had fallen into place.

At one point the captain’s voice streamed over the P.A. system.  “Ladies and Gentlemen, thank you for flying with us today. Due to some unexpected orders from the ground crew, this plane will no longer be flying to England. We will be changing directions entirely and landing in Africa. I can’t give you much information other than we cannot alter our course. You will have no choice but to make the best of the new arrangement. We’re not sure when we’ll be able to get you back home but you all seem like capable people who can wing it just fine. So, with that in mind, enjoy your new destination!”

Understandably, the mother was horrified at this news. Her husband remained cool and collected. She was both grateful, and horrified, that he wasn’t as freaked out as she was. How could he be so calm??! How could this enormous error happen? She wasn’t prepared for this abrupt switch of plans! This was not the way her dream vacation was supposed to go! The remainder of the flight was spent in abject misery as she ruminated, sulked, cried, moaned, hollered and generally cursed her fate.

By the time the plane landed, she was in quite a quandary. While this was one of the most unsettling experiences of her life, she also knew that falling apart would not help anyone. She’d have to be strong for the kids. She’d have lean on her husband when she could. But mostly, she’d have to lean on herself. She’d attempt to make the best of it. What choice did she have?

Once on the ground, the luggage never arrived. Everyone was sweltering in their woolen sweaters and itchy pants. What could she do? She borrowed a pair of scissors from a taxi driver and cut off the sleeves which they used as headbands. She turned their pants into shorts and hailed a taxi.

As this disheveled family of five crowded into a cab, the driver had a good laugh at their outfits. It turns out he spoke English and asked what happened. Against her normally private nature, she told him. He invited her family home to his home and she said yes. Clearly she needed help and couldn’t rely on herself anymore.

For the next two weeks, her family  did not shop. They did not tour museums. They did not eat at restaurants.

They ate home cooked meals around a plain wooden table with the taxi driver’s wife, her sisters, their kids and 20 other people with names  she could barely pronounce on Day 1 but by Day 20 knew as well as her own family’s names.

The kids ran around  barefoot  with children who didn’t speak their language but sure knew how to laugh.

Her husband helped reupholster  taxi driver’s car which earned the family some extra money which they turned around and used for goodbye feast when the time came to finally fly back home.

With bellies full of food and hearts full of gratitude, they said their tearful goodbyes and boarded the plane.  As they flew back, the mother couldn’t help but think that Africa was a far cry from England. It wasn’t as civilized. It wasn’t as comfortable. But it was exotic. It was different. And her family bonded more in that two-week unplanned adventure in an African village than they ever would have in pristine London hotel.

That mama, despite feeling like she was going to drown in despair, faked a good attitude until a true, authentic joy bubbled up from the pit of her soul. Despite signing up for it, she made the best of it and had an adventure of a lifetime.

You will, too. Grab your TS passport. TS is an adventure. It might seem scary, but let this book be your road map.

Let me be your tour guide.

It’s going to be a bumpy ride, but I promise you’ll land safely and have the time of your life.

Buckle your seatbelt. It’s time to Happily Tick Off.