Our Journey

Recently an old friend from college reached out to me after seeing my first NJCTS blog post. We hadn’t spoken in well over 10 years and we were both surprised by this new common bond we had. Her oldest daughter was just diagnosed with Tourette syndrome at age 7. My friend was looking for some support, still processing her daughter’s diagnosis and still reeling from the shock. She wanted to know about our experience having two children with TS.  How old were my kids when they were diagnosed? What were their initial symptoms? How are they doing now? Are they on medication? Which ones? Are they in therapy? How’s it going? How about school? Do they have special accommodations? We immediately knew that a 20 mins phone call wasn’t going to cut it! We need more time and we are in the process of creating that. This experience gave me the idea to write a new blog post. Perhaps other parents of the newly diagnosed had similar questions.

I vividly remember the sinking feeling in my stomach during the early days of Maddie’s diagnosis. I vacillated between worrying about her future, sadness watching her tic (ironically she wasn’t bothered by most of them) and heartbreak that my “normal healthy child” was no longer either of these things. What got me through was the support of other parents. Hearing how well other kids were doing years after diagnosis gave me comfort, relief and strength. So here I am to tell you that both of my children are doing incredibly well. They are thriving in school, very social with lots of friends and active in sports and other community activities.

As a recovering “doer,” after Maddie was diagnosed, I jumped into massive action. I searched high and low for ways to manage/reduce tics. I came across all kinds of recommendations and books. We started with dietary changes. Although a gluten and dairy free diet made no difference, cutting out food dyes and artificial colors did. Limiting chocolate intake and reducing sweets seemed to make an impact as well.
I noticed that after Maddie would recover from an illness, her tics would go into overdrive. I began to research different ways to build the immune system to protect her from getting sick so frequently. As a daycare kid from 4 months of age, Maddie was always fighting something. My friend who is a pharmacist supported me in getting Maddie on a great natural multivitamin, fish oil, a powerful probiotic (gut health is apparently linked to brain function), vitamin c and magnesium. The vitamin section at Whole Foods became a frequent stop for me. We also had Maddie’s tonsils removed. Maddie had 9 bouts of strep by age 6. She was actually diagnosed with PANDAS by one of the three neurologists we took her to. My husband and I noticed a big (and positive) difference in the frequency of her illnesses with these changes. That said, definitely consult your doctor before starting your child on a vitamin regimen. This certainly is not my area of expertise.

The next important area we focused on was school. We immediately got Maddie a tutor (to build her frustration tolerance) and a 504 plan. Some of her accommodations are:
• Provide instruction in a calm, structured setting
• Modify homework assignments as needed
• Energy breaks as needed
• Inform all staff members who have contact with Maddie including substitute teachers of her diagnosis to better understand Maddie’s needs
• Provide a private location (counseling office or nurse’s office) to let tics out and/or emotional release as needed
• Provide staff development on Tourette’s syndrome as to increase awareness and education
• Provide progress monitoring for academic and social/emotional needs reported to parents 2 times per month
• Utilized alternative space for testing taking (study carrel, small table)
• When appropriate provide study guides
• Provide student support to help dissipate tic urges (ie stress ball, chewing gum, hard candy to suck on, etc)
• Provide student support in organization of locker and binders 2x monthly
• Encourage asking for help if needed or if she does not know the answer to a question
• Consultation with guidance counselor 2x per month for September and October
• Modify assessments for spacing in order to make assessment for visually manageable (ie. Reduce the number of math problems on page, reduce the number of graphics, reduce the number of tasks per page, etc.)

Next, my husband and I spoke with Maddie’s neurologist about medication. He recommended that we think about how we would know it was time (if ever) to treat Maddie with medication. My husband and I decided that we would revisit medication if any of three areas of Maddie’s life became negatively impacted by her tics and/or co-morbid anxiety disorder and OCD like behavior. These three areas were: sleep, social and academic. I wrote a letter to the neurologist explaining our rationale. In truth this was more for me than for him. I wanted him to hold me accountable to what I said if/when the day came. Medicating my child was not easy and I was very frightened at the prospect. I needed someone to hold me to my word and not allow me to push treatment off out of fear.
Finally, came counseling for both Maddie and me. We were very blessed to find great therapists. Maddie worked with Dr. Lori Rockmore in Millburn, NJ. Dr. Rockmore taught us about Exposure Therapy. At age 6, this type of therapy worked wonders for Maddie. Her triggers were largely around clothing at that age – a jean skirt that laid funny on her waist, her socks needing to lay perfectly straight on her toes. Dr. Rockmore explained that the earlier we started with Exposure Therapy, the more effective it would be in the future. After success with Dr. Rockmore, when my husband and I start noticing new obsessive behaviors/fears, we began quickly implementing Exposure Therapy. We’ve been fortunate to catch the behaviors early and successfully intervene. Incredibly, through some networking, I was referred to a therapist for me that works with parents of children with TS, Gayle Forman, LCSW, ACSW, MSW. TS is one of Gayle’s areas of expertise and she met me with patience, compassion and strategies to get through flare-ups.

Our journey has been and continues to be unique to us. Our son’s experience of TS has been similar but certainly not the same as our daughters. My intention is to support other parents in their journey. As always, feel free to reach out to me at any time. My commitment is to support other parents through early diagnosis and challenges related to their child’s experience with TS.

Emily Golden, ACC
Coach & HR Consultant
Golden Resources, LLC
emily@golden-resources.com
www.golden-resources.com

Who will you be in the face of your child’s differences?

During my yoga practice this weekend, my teacher Jess shared something that got me thinking.  She said that at the end of her pregnancy with her twins, she was up 80 pounds and feeling out of sorts with her body.  I can only imagine.  Jess’ friend, whom I assume is another yogi, commented on how wonderful this was.  Jess must have looked at her dumbfounded.  What could be great about all this weight gain?  About feeling like her body was alien to her?  About knowing what lay ahead to get back in shape once she gave birth?  Jess’ friend explained further.  She said that now Jess had the gift of understanding her ill, overweight and out of shape students in a new and profound way because she herself had experienced something similar.  Looking at Jess today you’d never know what she went through.  When she teaches though, she shares her experiences from the heart, relates from a place of purity and connection to all of her students no matter where they are with their practice, their body, their mind.  It doesn’t matter.  It hit me that this level of empathy and ability to support her students through the actual asana and the emotional blocks is possible because of Jess’ journey, not in spite of it.  No training or book could have prepared Jess the way personal experience has.  So why do I share this story you may wonder?  Simply put, I see my own journey in Jess’.

In June of 2010, my 5 year old daughter was diagnosed with Tourette Syndrome.  The diagnosis came after months of desperately trying to figure out what was wrong with her.  The months leading up to the diagnosis were filled with doctor’s visits, conversations with other parents, reading books and of course MANY Google searches on tics, anxiety, rage disorder, neurologists, vitamin regiments, dietary changes…  I felt alone, petrified of the future, dreading the diagnosis I was pretty sure we’d be getting.  Continue reading

Going to battle alone

Hello, my name is Candy. I am the mother of three kids and my oldest son, 23 years old, has ADD. My daughter, 16 years old, is doing great in school. And my youngest is 9 1/2 and he has ADHD and was just diagnosed with TS. I’m a bit overwhelmed with it all, and having in-laws whom cannot except anything that there is anything wrong. They don’t know about the TS yet. My husband is also hard to except this as well. I feel like I’m going to battle alone! Any help would be wonderful. Thank you for your time and I hope to hear from you soon.

Why Your Child with Tourettes Will Be Set for Success

Set-for-Success

Last year, while I was pregnant, I wrote about some of the thoughts that ran through my head, particularly about the possibility of genetically passing my Tourettes down to my baby. Apparently, I’m not the only one. I’ve had multiple parents write in to me, concerned about giving their children their disorder.

We know the pain that comes when someone tells you to, “stop that,” because they find our tics annoying. We hate the idea of our children being harassed by playmates, school peers, even coworkers one day because we know we won’t always be there to stick up for them.

I recently received a comment on my post, “6 Ways to Support Your Friend with Tourettes,” from a gentleman, stating his father used to hit him when he ticced because he thought it was on purpose. I know someone personally whose grandmother slapped him when he would tic for the same reason. Books like, “Front of the Class” by Brad Cohen, and “World’s Strongest Librarian,” by Josh Hanagarne record struggles that the authors go through even as adults that involve being thrown out of theaters and restaurants, and struggling to find a job with an employer who can see (or hear) past the tics.

As I type this, I’m watching Jelly Bean sleeping through the monitor. She turned 10 months old this week, and that kid already has my entire being wrapped around her little pinky. Her smile, her slobbery kisses, the sparkle in her eyes, the way she looks at me when I walk into the room makes me want to sob with joy, as well as fear. Like so many other parents with tics, I ask,

“If she inherits my tics, how do I watch her face the cruelty this world heaps onto those who are different?”

You will know that your child is already one step ahead of where you were because your child will have a parent who:

  • will better know how to recognize tics if they appear
  • will better know to bring her to her pediatrician to see if she needs a diagnosis
  • can go to bat for him if he needs extra time at school, by requesting a 504 or educating his school staff about Tourettes (because believe me, not many people know)
  • can share your tricks with him when he struggles to manage his tics in church, or to leave if they become overwhelming
  • can understand and empathize when the tics strike, instead of embarrassing him for it or telling him to quit
  • can help her siblings understand that she needs their support, not their jokes
  • can teach him to self-advocate in situations where his disorder is misunderstood
  • can teach him to educate others about his own condition
  • can help him do his best to find employment where he can soar beyond people’s expectations
  • can build her up so she’s less afraid to tell a significant other about her disorder
  • can help him see that the world is still his…he’ll just have to come at it from a different angle than some other people

We want so desperately to promise our babies that they won’t struggle the way we did. But we can’t. What we can promise is to be their cheerleaders when they stumble, their voices when they can’t speak up for themselves. We can listen when they need to talk, and hug if they need to be held. We can let them know they’re not alone. We can help them learn management techniques that we’ve picked up over the years, and help them develop healthy habits like maintaining healthy diets and regularly exercising. We can make a list of tics and habits for the pediatrician so he knows which direction he should be looking in. We can show our children they deserve to be loved and respected like everyone else. We can love them, not in spite of their tics, but for who they are as whole, complete, real people. We can pray for them until our knees go numb.

Tourettes may have been Hell for your when you were young, but that doesn’t mean it has to be that way for your child. My parents made a world of difference in helping me see myself with the same kind of worth I saw in other people without Tourettes. You can do the same for your children, making their lives better than yours was because you, their parents, care. And that is exactly what our children need.

Tip #3 to Reduce Tics: Limit Artificial Flavors

rainbow-of-risksGreetings from TicVille:

Yes, despite my big hopes that Taurine was the magic elixir that was going to eliminate all tics, twitches and noise, they are back. Turns out… crazy as this is going to sound…. that MY KID HAS TOURETTE SYNDROME. Apparently there is not a one-size-fits-all cure.

That said, the tics are not as bad as they have been in the past, leading me to believe that the Taurine and Magnesium protocol is helping. As soon as money permits we’ll go back to our favorite  nutritionist to get the rest of the testing done.

  • Does he he need to go on GAPS due to a leaky gut?
  • Does he need to eliminate dairy?
  • Does he need detox from some heavy metals left over from his vaccinations years ago?

Perhaps all of it. The old Andrea would want to do that now! Now! Now! The new Andrea… the one who is trying to pause before freaking out… is going to take it one day at a time. That seems to make life more tolerable – not just for me, but for everyone in my family.

Here’s the deal, folk. My kid is already 13. I can spend the rest of his remaining childhood freaking out over this crazy syndrome – about everything I could or could not be doing – or I can attempt to do the best I can and just love the hell out of him. I’m choosing the second.

In the meantime, I’ll continue to keep him as healthy as possible which leads to Tip #3 on my tic reduction list: Limiting Food Dye.

Below are a few excerpts from this post that talks talks about why it’s been banned in Europe.

“In 2008, a ruling was passed banning the use of the specific food colors in the UK [7]. This followed allegations that the artificial food colors used have promoted health problems in children [8]. Consequently, the UK Food Standards Agency has called for the ban on the use of six foods coloring in the preparation of ingestible products such as foods and drinks since they have been associated with promoting hyperactivity in children .”

And then there’s this:

“In the United States, there have been legal battles over the use of synthetic banned food dyes by Kraft Foods Group Inc. by two mothers. The two women wanted Kraft to adopt safer natural food coloring in the making of food products as practiced in many other countries such as the UK but declined to adopt the use of the natural food dyes.”

Does it Really Make a Difference?

This post talks about how the verdict is still out on food dye. It says that some kids aren’t affected by it at all, while others are highly allergic. My kid is probably somewhere in between. My goal is to keep him eating as clean as possible and then just hope for the best.

2016 – Making Good Choices for Mama!

I don’t 100% know if food dye makes a difference, but I know what does: taking care of me. That’s the goal this year. Why? Because if I don’t, who will?

As I head into 2016, I’m once again looking at my different work options. My husband is in Year 3 of his own business, and while it’s doing okay, we need the income. Ideally I’d do something that really uses my skills, like writing musicals about Tourettes and going on tour as the spokesperson for Yuban! But until that ideal job comes along, I have my freelance writing clients and my Ebay biz. I will take a steady approach to applying and not get crazy… like this morning… when after ONE HOUR of applying for an online job I was booted off the system. Oh, yeah, that was fun. I’m  not 100% sure what “taking it easy” with this job hunt will mean, but I do know this: God has a plan.

Being a Ball of Nerves Doesn’t Work – Who Knew?

It seems to me that when I get into self-will I get myself into a load of trouble. I’ve decided this year that rather than go nuts trying to make something happen come hell or high water (which involves lots of arguing, stress and occasionally screaming at my kids that “Your room looks like a Salvation Army with a bad case of the runs!” which… well… does not a peaceful bedtime make) I’ll just do a little bit each day.

And then I’ll rest.

Like today, when I stopped for an hour to have a cup of coffee with Marta, the 67 year old neighbor, who put in her teeth for the occasion and told me all about her son in Mexico who runs his own I.T. business and is sending his ma-mah on a $3000 tour of her home country in the Spring.

Do I want the tics to go away? Yes. But more important than that, I want to be sure I don’t miss out on the joy of my son’s beautiful laugh.

Do I want to make more money so my kids don’t have teeth resembling Tom Sawyer’s garden gate? Absolutely. But until that happens, there’s a Costco run in a few weeks with my adopted Jewish Bubba, Ginnie.

Do I want my kids to clean their room? Yes. But until they get their own space (which they’ll have in a few weeks thanks to a big rearrange) I’m just going to let the room go. Why? Because in the big scheme of life, it’s not important. But other things are.

gegegThere’s cake to be baked with my daughter.

efefe

There’s a warm fire to be had this evening where my son, tics and all, will read a chapter to me of The Hunger Games. (I’ll take it before he realizes just how uncool his mother really is.) There will, of course, be food! (Everything is better with Mexican food. Thank you, Fred – the kid’s janitor at public school – who makes a tamale like nobody’s business.)

aaaa

And there’s this blog to write.

In the hustle and bustle of making a buck, I’ve missed my personal writing. It’s what makes my soul happy. If you’ll check in, I’ll write.

Until next time, May God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

Happily Ticked off

Tip #1 to Limit Tics: Reduce Electronics

boy

In this article, I wrote a list of 20 things I’m doing to manage tics. I broke the list down into simple changes/habits vs. more technical. Because it’s Christmas and I have so much to do that pretty sure I’ll be ticking myself, I am starting with the easy changes. I’d love your opinion, too!

# Tip to Limiting Tics: Less Screen Time/Video Games

This article by Psychology Today suggests a screen fast of up to 3 weeks to calm the tics down. “Electronic screen media—since video games and computer use increases dopamineand tics are dopamine-related, it’s understandable that electronic media worsens tics.  For bothersome tics, I recommend a three week “electronic fast”(link is external) to normalize brain chemistry and improve sleep (restful sleep improves tics in and of itself).”

Having gone back and forth with this for over 8 years (see this post from 2011 when I attributed the Nintendo DS to devil’s dung) I have a few things to say about an electronic fast.

  1. It works.
  2. But is it worth it?

Yes, there are many moms (such as this post from ACN shows) that have seen improvement with their kids’ tics by eliminating screen time altogether, but this can be tricky if you have a child like mine. Sometimes the pressure and sadness over not being able to do what he loves make my kid tic more.

Many of my super holistic friends, as well as Stink’s naturopath, are of the ilk that just because a kid likes something doesn’t mean it’s healthy for them. For them it’s a no-brainer (no pun intended on the messing up one’s brain-er part) that if something is bad for you, it must go.

I choose, for example, not to drink wine at all because 3 glasses of it makes me nutty. The thing with video games, for this mama anyway, is that I don’t find the usage – in moderation – to be the same thing as drinking and driving over squirrels with my kids in the back seat of the SUV (playing video games).

I’ve decided, after battling the video game demon for 8  years, that a few tics in exchange for moderate video game use is okay. It’s not an all or nothing thing for us. Combined with many other healthy alternatives, I’m okay with it. For my kid, I let him play as long as there are adequate boundaries around it.

Here’s how I handle the video game usage

  • None Monday – Thursday
  • 2 hours/day Friday/Saturday/Sunday
  • Exercise is a must – at least 30 minutes Friday/Saturday/Sunday
  • Continue with healthy diet (Zero gluten, dairy to be removed in January)
  • Adequate sleep
  • More to come when I go through the list

Video Games – The Great Motivator

My kid likes video gaming enough that I use it as a motivator to get stuff done. “Hey, Stink, want an extra 20 minutes of Mario today? I need my windows cleaned.” He wins, I win.

With my kid turning 13 in January, I am more and more aware that he is not a kid who fits the “norm” by any means. He doesn’t play sports. He doesn’t care about popularity. He reads a book a week. He loves drama.  He still collects Pokemon. And… he connects with other boys who play video games. I am not willing to take away this love for him.

ADD vs. Tics

I am now looking at video games more from the angle of ADD and less from tics. The tics aren’t a concern for him personally. He has friends and doesn’t mind some twitches and noises. I am realizing that the ADD is causing more of a problem than the tics themselves, and this is the new lense I am viewing the computer time through.

To the Young Moms of Kids Who Tic

With your little tickers so little, you have the opportunity to set up the culture of your home in a way that works best for you. When they are small, it’s easier to make big changes. It’s a personal choice but I say you should think about it.

Looking Back, Would I Make a Different Choice on the Video Games?

As for me, would I make a different choice on video games if my son were younger and I could set the parameters early? Maybe. But then again, even when he was small, I didn’t make the choice to eliminate them altogether. My husband is a gamer. My kid, even at 3, loved to play Elmo on the computer. I suppose, deep inside, I wish my kid was into other things, but he’s not, and guess what? I am doing the best I can. I set boundaries on certain behaviors, let other things go, and try to live with what is. (But I won’t lie: video game usage has been my biggest battle and one I still fight to this day. It’s tiring.)

What are your thoughts on this? Think I’m nuts for letting my kid play video games when maybe they would be less without them? (PS: My kid is back on Taurine and his tics are down 50%. Video game usage hasn’t changed. For me, I made the right choice. More to come.)

Until next time, May God grant you the serenity to accept the tics you can’t change, change the tics you can, and have the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

I Don’t Know

As parents how many times a day do we hear, “I don’t know”?

“I don’t know why I don’t write down my assignments.”

“I don’t know why I didn’t turn in my assignment.”

“I don’t know where I put my water bottles.”

“I don’t know where I put my assignment.”

If I had a penny for each “I don’t know,” I would be rich. At first I took it as if my child wasn’t trying hard enough, so my response, my irritated response would always be some version of, “why don’t you know?”  I then became the teacher in Charlie Brown, “Wha, wha, wha, wha, wha!”  This did nothing for him or for me.  I had read all of the books, attended the webinars, but when you hear the, “I don’t know…” for the ten thousandth time, for me it wasn’t that he could not remember what he could not find, it was, it “is” the fear that engulfs me  for my son’s future.  This seemingly small, “I don’t know,” is bigger than those word three words. As a parent with a child with TS, most times things are not “just” small.

So, I made a choice to change how I operate, how I approach his “I don’t knows.”  It was time to put what I learned into practice.  I would love to say, the frustration is gone, but as quickly as it comes to mind, it disappears and we figure out what broke down.  My son and I say the following to each other all the time, “The definition of insanity is to keep ‘consciously’ doing the same thing over and over expecting the result we really desire.”  So the key is to find where the breakdown is.  The “fool’s gold” in all of this is that it is easy.  We have come up with systems that work for a while, and stop working.  The investigation begins, why is it no longer working?  Where is the breakdown?  What happened?  Did it ever work, or was that fool’s gold?  However, the light is when you and your child/teen finally find an answer to just one of the, “I don’t knows”, and it sticks and works, is worth it all.

Now, when it comes to the “Teen” “I don’t knows”  I still don’t know what to do about that!!!

 

Young Magician Wants to Make Tourette Syndrome Disappear For All

Ben Mars, aka “The Great Marsini” invites the public to stand up and step out on behalf of 20,000 NJ school-age kids with Tourette Syndrome at the 6th annual NJ Walks for TS at Mendham on Nov. 14th.

Drive through Teaneck and you might catch “The Great Marsini” at work. The entrepreneurial 10-year-old makes sure his lemonade or hot cocoa stand (depending on the season) stands above the rest.

“I do magic tricks,” said Ben Mars. “One time a man stopped by on his way to bringing his wife to the hospital just for a glass of lemonade.”

Now the fifth grader is trying to catch the public’s attention for a different cause. He’s a member of the Youth Committee for the sixth annual NJ Walks for TS at Mendham. The event is a 5K walk and family fun run to benefit the Education Outreach Program of the NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS).

Tourette Syndrome (TS) is an inherited neurological disorder characterized by involuntary movements or sounds known as tics. TS affects as many as 1 in 100 people and is frequently accompanied by ADHD, obsessive-compulsive disorder, learning disabilities, and childhood mental health conditions.

Kids with TS often report feelings of isolation and having a visible disorder makes them targets for bullies.  Classroom learning is challenging for children coping with more than one disorder beyond TS. School can be extremely difficult for the 20,000 New Jersey kids living with TS. Ben was one of them.

“It was hard to find a school for me,” said Ben. “I kept thinking am I a problem?

He is happy at The Park Academy in River Vale and now wants to help others with TS feel understood. He invites the public to attend NJ Walks for TS at Mendham on November 14th to learn about TS and to extend friendship to the TS community.  Registration is available at www.njcts.org.

All proceeds go to outreach programs to teachers, students, doctors, and other healthcare professionals at schools and hospitals across the state.

Ben knows firsthand the empowerment that kids with TS feel once they are understood— especially through in-school presentations.

As for his greatest trick, Ben wants to make TS disappear by working actively for a cure. He’s on the right team as NJCTS is home to the world’s only TS Cell and DNA repository at Rutgers University. For right now, the scientists will handle the research while Ben uses his charm to bring attention to the cause.

On November 14th, Ben will walk with scores of other kids with TS for a day of awareness, acceptance, and advocacy—and he wants you to join them. Registration for NJ Walks for TS begins at 8 a.m. at Mendham Borough Park at the intersection of Mountain and Park Avenues. The day will feature a timed 5K and simultaneous walk, music by the Good Works Band and solo artist Dawson Coyle, food and family fun. For questions about the walk, or to learn more about TS, visit www.njcts.org or call 908-575-7350.

Fifth-grader is Stepping Up Awareness Efforts

Kyle Swords of Pine Brook, NJ with NJCTS Youth Advocate Mike Hayden at a recent presentation at the Hilldale Elementary School.

Kyle Swords of Pine Brook, NJ with NJCTS Youth Advocate Mike Hayden at a recent presentation at the Hilldale Elementary School.

An inspiring 10 year old is quickly becoming his own best advocate.

Kyle Swords of Pine Brook, NJ, is educating his community about an often misunderstood and misdiagnosed disorder which he faces every day. In kindergarten, he started developing tics and 2 years ago he was officially diagnosed with Tourette Syndrome (TS)—a neurological disorder characterized by involuntary movements or sounds known as tics. TS affects as many as 1 in 100 people, or an estimated 20,000 school-age children in New Jersey today.

Accepting the diagnosis wasn’t easy at first for Kyle and his family but, over the summer, he attended the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) Team Up with Tim Howard event at Rutgers and it changed his outlook on TS.

“Prior to this event, Kyle had never met other children his age who also have Tourette,” said his mother, Christina Swords. “It was an incredibly powerful experience for him to see so many other people, including [U.S. Men’s National Team Goalkeeper] Tim Howard, who share his condition. For the first time, having TS felt special to Kyle, and even a little bit ‘cool.’”

So, Kyle and his family decided it was time to educate their community about TS.

Hilldale Elementary School student and his family are giving back, supporting other families affected by Tourette Syndrome in their community.

Hilldale Elementary School student and his family are giving back, supporting other families affected by Tourette Syndrome in their community.

“People are often wary of behaviors they don’t understand and as such, we felt that a great way to support Kyle would be to bring awareness to the school about his condition,” said Christina.

The Swords’s reached out to NJCTS Education Outreach Coordinator Gina Maria Jones to schedule a Youth Advocate Presentation at Kyle’s school. With the help of NJCTS Youth Advocate Mike Hayden, Kyle educated more than 150 4th- and 5th-graders at Hilldale Elementary School about TS and about treating others with respect. Kyle bravely addressed the audience and answered some questions about his experience with TS.

Kyle stood proud after the presentation, knowing he had the support and understanding of his teachers and classmates.

“I’m not so worried about my tics anymore,” said Kyle. “Everyone understands that it’s just my TS.” If there is one thing Kyle wants people to know, it’s that “Kids with TS can do anything that kids without TS can do.”

Kyle is also serving on the Youth Committee of NJ Walks for TS at Mendham coming up on Saturday, November 14. Youth Committee members serve as local examples of individuals living successfully with TS—they form teams, fund-raise, and inspire others to join them for a day of awareness and advocacy on behalf of all individuals living with the challenges of TS.

NJ Walks for TS benefits the NJCTS Education Outreach Program, providing in-service trainings and Youth Advocate presentations to schools and hospitals across the state. The program is making it possible for NJCTS to provide the latest information to help professionals identify, diagnose and manage TS and its associated disorders.

“As a family, our goal is to spread awareness of TS into our community,” said Christina. “We want to give back and support other families in the community in any way possible.”

NJ Walks for TS at Mendham is set for Saturday, Nov. 14th at Mendham Borough Park at the intersection of Mountain and Park Avenues. The event is rain or shine and check-in will begin at 8 a.m. For more information about the event, or to learn more about Tourette Syndrome, visit www.njcts.org.

What are the chances that my son or daughter will have TS and OCD?

OCD (Obsessive Compulsive Disorder) or obsessive compulsive behaviors** (OCBs) and Tourette, as well as another tic disorder called Chronic Tic Disorder* (CT), often appear together. Research shows these conditions are probably genetically linked and as a result, we tend to see both conditions run in families.

Before we discusses the risks of being born with these conditions, let’s look at some general stats on TS and OCD:

  • 25%-50% of people with Tourette or Chronic Tic Disorder meet the criteria for a formal diagnosis of OCD
  • 80% of people with Tourette or Chronic tic disorder may have obsessive compulsive behaviors
  • 30% of people with OCD have a family history of co-occurring Tourette or Chronic Tic Disorder
  • A lot of recent research including twin studies, neuroimaging studies, and a genome-wide complex trait analysis, suggest that there is a significant genetic association between TS and OCD

A large study published in 2015 took a look at these two conditions. Here are some of the key results:

  1. If your oldest sibling has TS or chronic tic disorder plus OCD, you have a significantly higher likelihood of having these conditions.
  • The risk of having TS or Chronic Tic Disorder (CT) plus OCD was higher for people who had an oldest sibling who was affected by these conditions
  • People with an oldest sibling with TS/CT were 18 times more likely to have a diagnosis of either Tourette or Chronic Tic Disorder
  • Individuals with an oldest sibling with OCD, were 5 times more likely to have an OCD diagnosis than a person who does not have an oldest sibling with OCD
  1. If you have a brother or sister with TS or Chronic tic disorder, you’re more likely to have these conditions than other people.
  • If one of your siblings has TS or CT, you have a 9.88% risk of also having CT/TS
  • If none of your siblings has TS or CT, you have 0.42% risk of having CT/TS
  1. If you have a brother or sister with OCD, you’re more likely to have these conditions than other people.
  • If one of your siblings has OCD, you have a 4.01% of having it as well
  • If none of your siblings have OCD, there is a 0.84% you will have it
  1. For full siblings with Tourette (same mom and same dad), the chance that their brother or sister will have TS is greater than for half-siblings (either same mom or same dad).
  • This suggests that there is a genetic contribution or basis for TS/CT

What is does this all mean?

Simply put, this is what we know right now—if you have a family member with TS and OCD, you’re more likely to have TS and OCD, too. Your chances of having TS and OCD are a lot greater if your older sibling has these conditions.

Please share your experiences or tell us what you think about this!

 

*Chronic Tic Disorder or CT: the presence of either involuntary motor or vocal tics

** Obsessive compulsive behaviors (OCBs): Reports show that 11-80% of patients with TS have OCB

Sources:

Browne, H. A. et al. “Familial Clustering of Tic Disorders and Obsessive-Complusive Disorder” JAMA Psychiatry, 2015: 72 (4).

Carroll, Amber & Robertson, Mary. Tourette Syndrome A Practical Guide for Teachers, Parents and Carers. David Fulton Publishers: 2000.

https://www.tourette.ca/tourette-blog/pub:219/What-are-the-chances-that-my-son-or-daughter-will-