“Ducks” and the beginning of our TS journey

When I first suspected and began to research TS I said to myself, okay, okay it will be alright. I am the type of person who will research, read, research, and read whatever I can on any challenge that affects my life. I need to know everything about it so that I can make informed choices. Although I had suspected TS, it was till a bombshell that had exploded, however, I kept moving on for every detail I could find about TS. I was given so much help during this time from the neurologist, PATSA, blogs, books, and movies. The book that I still refer to is “Against Medical Advice,” by James Patterson and Hal Friedman, and the Hallmark movie, “Head of the Class.” These and more helped me so much in the beginning and to this day. I want to be able to help other parents, especially new parents, to know that TS is not a death sentence. It is the beginning of a journey we begin for our children by learning about TS, and the tools they need to be successful, and eventually transfer the reins to them.

My son has TS. We talk about TS as if it is a “Person” or “Entity.” When he was younger, I wanted to identify TS not as something bad, but to get him to understand what he could and could not do in order to control TS as much as possible. One of the other things we do is call his tics “Ducks.” I will say, I think I see a “duck.” Sometimes he will agree, or not. We will go through this a few more times maybe over a week or two, until I say nope, I was wrong, or he realizes that there is really a “duck” roaming around. At that point we will discuss if Competing Responses are necessary, or if he just has to make note of it. We have come a long way from the beginning when we first found out about his diagnoses. He has come a long way, and I am so proud of him. He was accepted and attended the Tim Howard Leadership Academy last summer, and he said on the ride home, “Mom I heard about kids with TS but I never saw any, and I felt like home for the first time.” What more can a mother ask for from her child.

20 Ways to Reduce Tics

family-11

As many of you know, I’m all about raising a kid whose spirit outweighs a few tics. But now that my baby is, gulp, a month shy of 13, it’s become apparent yet again to take a look at management. His tics are loud. I mean, so loud and startling at times that this morning I yelled, “Holy Tic Man, take it down a notch!”

I get that he can’t help ticking. And I’m beyond happy that he’s okay with his Tourettes. (I know that many of your babies are not as comfortable with them. We deal with other issues and believe me, I get the heartbreak. You have an ally in me!)

But here’s the deal: I suffer from anxiety. I do. It’s waaaaay better now than it’s ever been, but here’s why. I don’t get to sit around all day and tell my husband through tears, “Ohhhh, I can’t work and pay the mortgage. I’m having a pity party and you’re not invited.” No. I take responsibility for my tendency to feel more neurotic than Willy Allen on 3 cups of Expresso fearful at times. I:

  • Eat well
  • Exercise
  • Take a little bit of Zoloft
  • Go to a few meetings each week
  • Talk to a therapist when I feel overwhelmed
  • Sleep well
  • Stay off of all mind alterating substances (No doobage and booze for this gal. I’ve been tempted lately, believe me, but I refrain.)
  • 2 cups of regular coffee in the morning only

The same has become true for Stink. The time has come for him to be a bit more pro-active with his vocal outbursts. If he can’t control them on his own (which apparently he can’t) we get to help him. We are the parents. We make the rules.

If you’re in that boat of wanting to suppress tics, here are some options for you.

BASICS (We’re on all of this except the dairy. That’s next.)

  1. Limit Screen time
  2. Insist on at least 30 minutes of exercise every day
  3. Limit sugar, food dyes and artificial flavors.
  4. Insist on a strong multi-vitamin
  5. Insist on a really good night sleep
  6. Get off gluten
  7. Get off dairy

MORE ADVANCED (We have the doctor and we started the magnesium. Next is the Taurine)

9. Naturopath – find one in your area that will take an integrative approach to tics. Ask him or her about supplements.

10. Supplements – Ask your naturopath about Taurine, Magnesium, a good fish oil

SUPER INDEPTH (This is happening in January after Ticmas Christmas.)

11. Salvia Test: Complete a 23andme.com‘s genetic saliva test to see what his DNA has to show for itself. Once you know, your doctor can see what is working in his body and what is not and treat it more efficiently.

12. Finger Stick Food Allergy – Get a finger stick food allergy panel by Alletess Labs.  Cost is $120. The test kit is sent to you, you can perform it in the convenience of your home and and then ship directly to the lab. Have results sent to your doctor. Once you know what your child is allergic to, you can start eliminating offending foods.

BONUS OPTIONS

13. GAPS: The GAPS diet is very intricate, but it has stunning results. In a nutshell, it heals the stomach lining so that food no longer slips through the holes, hits the blood stream and causes brain inflammation (which can cause tics.) Personally I would not resort to this diet without knowing if your child does indeed have a leaky gut. I would work with a naturopath on this.

14. Hemp Oil: There has been much research lately about the non-habit forming part of the pot leaf providing tremendous relief (or shall we say “re-leaf” for tics and twitches. Here is a link that someone in my Twitch and Bitch provided. Her son’s tics were so bad he had to miss school. They are 90% reduced now.

15. CBT: Known as Cognitive Behavior Therapy, this technique allows a child to transfer a loud or strong tic into one that is quieter and less obvious. It requires a certified therapist to work with your child.

16. Meditation: Just 30 minutes of meditation per day can rewire neurons and calm down the dopamine that causes tics. Learning to breathe and center oneself can keep give your child an opportunity to have more control.

17. Therapy: Having your child talk to a therapist can be huge in teaching them how to advocate for themselves. It’s crucial (in my humble opinion) to have them see their part in everything. While they can’t control tics, they can control how they advocate for themselves and how they behave toward others.

18. Treat the other Conditions: Most kids with tics have other issues. Often times when one treats the ADHD or the OCD (or whatever else is present) the child is calmer and the tics become fewer.

19. Hobbies: Insist on helping them find a hobby they love: Often times when a child finds something they are passionate about, the tics become less when they are focused on it.

20. Love Them and Have Fun: That is the best tip of all. Your child might not always remember a tic free childhood, but they will hopefully remember one filled with the support of people who adored them no matter what.

AF1

Come back this week as I’ll break down this list over the course of the next six weeks, giving more detail on each tip.

Until then, may God grant you the serenity to accept the tics you cannot change, change the tics you can, and have the wisdom to know the difference.

My book, Happily Ticked Off, is available on Pre-Order on Amazon. Get your copy today!

Happily Ticked offIf you would like to read more from me, please check me out on my new website, http://www.andreafrazerwrites.com.

NJ Walks for TS Honorary Committee Welcomes Congressman Leonard Lance

RepLeonardLance-NJ06Congressman Leonard Lance (R-7) continues his support of NJ Walks for TS at Mendham by joining the event’s Honorary Committee. The 6th annual 5K walk/run at Mendham Borough Park is a day of advocacy, awareness, acceptance, and action.

NJ Walks for TS at Mendham benefits the Education Outreach Program of the NJ Center for Tourette Syndrome which educates students and teachers at schools in every corner of New Jersey about TS, anti-bullying and self-advocacy as well as delivering on-site hospital training for doctors. Each member of the Honorary Committee has a history of support for the 1 in 100 children living with Tourette Syndrome (TS)—a neurological disorder characterized by uncontrollable movements or sounds known as tics.

Rep. Lance is a longtime champion of NJCTS, beginning with his days in the New Jersey State Senate. He is a co-sponsor of federal legislation for Tourette Syndrome and hosts roundtable discussions with families living with the disorder.

“NJCTS is grateful for Congressman Lance’s continued support of NJ Walks for TS at Mendham,” said NJCTS Executive Director Faith W. Rice. “We hope others will follow his lead and step out in support of the thousands of kids and families living with TS in New Jersey today.”

To join the  Honorary Committee, start a team or register for the walk, call at 908-575-7350 or visit www.njcts.org.

Congressman Frelinghuysen Joins 6th Annual NJ Walks for TS at Mendham Honorary Committee

Congressman Rodney Frelinghuysen (R-11), shown here at the one of the first NJ Walks for TS at Mendham events, has joined the Honorary Committee for this year's event on Nov. 14th.

Congressman Rodney Frelinghuysen (R-11), shown here at the one of the first NJ Walks for TS at Mendham events, has joined the Honorary Committee for this year’s event on Nov. 14th.

Congressman Rodney Frelinghuysen (R-11) continues his support for the NJ Walks movement by joining the Honorary Committee of this year’s event. The 6th annual NJ Walks for TS at Mendham is a 5K walk/run is Saturday, November 14th at Mendham Borough Park designed as a day of advocacy, awareness, acceptance, and action.

NJ Walks for TS at Mendham benefits the NJCTS Education Outreach Program, which educates healthcare professionals, teachers and students at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying and self-advocacy. Each member of the Honorary Committee has a history of support for the 1 in 100 children living with Tourette Syndrome (TS)—a neurological disorder characterized by uncontrollable movements or sounds known as tics.

Rep. Frelinghuysen is an NJCTS supporter and co-sponsor of federal legislation for Tourette Syndrome.

“NJCTS is grateful for Rep. Frelinghuysen’s continued support,” said NJCTS Executive Director Faith W. Rice. “We hope others follow his example of stepping up on behalf of the TS community.”

To join the  Honorary Committee, start a team or register for the walk, call at 908-575-7350 or visit www.njcts.org.

Congressman Sires Returns to the Honorary Committee for the 6th Annual NJ Walks for TS at Mendham

SiresCongressman Albio Sires (D-8) continues his support for  New Jersey Walks for TS by joining this year’s Honorary Committee. The sixth annual NJ Walks for TS at Mendham Borough Park will take place this Saturday, Nov. 14th. The 5K walk/run is a day of advocacy, awareness, acceptance and action on behalf of the Tourette Syndrome (TS) community.

NJ Walks for TS at Mendham benefits the NJCTS Education Outreach Program, which educates students and teachers at schools in every corner of the state about TS, anti-bullying and self-advocacy, as well as on-site hospital trainings for doctors. Each member of the Honorary Committee has a history of support for the 20,000 New Jersey children living with TS—a neurological disorder characterized by uncontrollable movements or sounds known as tics.

Rep. Sires has a long history of supporting the TS community in New Jersey. During his days as the New Jersey General Assembly Speaker, he helped obtain funding to create the NJ Center for Tourette Syndrome & Associated Disorders, the nation’s first Center of Excellence for Tourette Syndrome. In Washington, D.C. , Congressman Sires introduced the first federal legislation for Tourette Syndrome.

“Standing up for the TS community is nothing new to Congressman Sires and we’re grateful for his continued support of NJ Walks for TS,” said NJCTS Executive Director Faith W. Rice. “We hope this inspires others to do the same on behalf of children and families living with TS and its associated disorders.”

To join the Honorary Committee, start a team, or register for the walk, call 908-575-7350 or visit www.njcts.org. NJ Walks for TS at Mendham will take place rain or shine, Saturday, Nov. 14th with registration beginning at 8 a.m.

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-