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

Tourette Research opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013Atlantic Neuroscience Institute at Overlook Medical Center routinely offers studies and clinical trials in a range of neurological and movement disorders, including Tourette syndrome. To learn more, please contact Caroline Sabatino, Research Associate, at 908-522-5901. 

 

Pediatric Tourette Trials

Ecopipam Treatment in Tourette syndrome

  • The purpose of this research study is to evaluate the effects an “investigational” drug (ecopipam) has on tics in subjects aged 7-17 years with Tourette syndrome (TS). Investigator: Roger Kurlan, MD

 

Multimodal Dietary Treatment in Tourette syndrome

  • This study is open to patients ages 12 -18 with Tourette syndrome (TS) and aims to evaluate whether a multimodal dietary approach will improve the symptoms of TS. Investigator: Roger Kurlan, MD

 

A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome

  • This study is open to children and adolescents ages 6-17 who have Tourette syndrome (TS), and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

 

Adult Tourette Trials

A Randomized, Double-blind, Placebo-controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

  • This study is open to adults ages 18-64 who have Tourette syndrome (TS) and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

 

7 Things to Help Reduce Tics!

Editor’s note: We welcome blogger AndreaF back to TSParentsOnline with a follow-up to her popular post from a few years ago. What are your experiences with these methods to reduce tics? We’d love to hear from you.

7-tipsBefore my book came out I was blogging pretty regularly for the New Jersey Center for Tourette Syndrome. One of the posts that garnered 61 comments was on Five Things that Can Help With Tics.

A few years later, and with more research, I have decided to update the list a bit for new parents who keep writing me with the same question.

Question: How do I fix the tics?

Answer: There is no one-size-fits all answer. Every child is different.

What Can You Do If You’re Freaking Out About Tics?

I’m no doctor, but after 10 years at this I can passionately state that all kids tic for a variety of reasons. I, personally, didn’t feel medication was the answer right off the bat for my son. It still isn’t. If it got severe enough, of course I would consider it, but so far it has not.

Here’s what I tell all parents who write me with concerns over their ticking kids. I tell them to ask a few important questions – the same ones I asked myself.

Questions to Ask if Your Child is Ticking

  • Could there be vitamin deficiencies happening?
  • What kind of environmental stressors could be worked on? (Less tension at home, less electronics?, etc.)
  • How much sleep is your child getting?
  • What kind of exercise is your child getting?
  • What does your child’s diet consist of?

It’s Up To You!

None of these questions are meant to either shame or suggest there are simple answers for complicated tic issues. Again, each child is different. My suggestion is to go to a naturopath and have your child evaluated for his/her individual condition. If you are low on funds (which I was) you can start with the basics and see if this helps. It helped in our case and I hope it helps in yours!

supplements

5 Things to Help With Tics

  1. Magnesium: I gave my son 500 mg of magnesium a day, and it really helped with his eye rolls and vocals. For some little kids this might be too much, but I’ve been told the worst thing excess magnesium can do is cause diarrhea. Now my son takes a calcium/magnesium supplement as the magnesium is best absorbed with calcium. The ratio is double the calcium to the magnesium.
  2. Gluten Free: It was a pain, but it helped, and continues to help enormously. He can concentrate more and can fall asleep quickly. When he was not gluten free, it would take hours for him to settle down. He is still a high energy kid, but much less so now.
  3. Dairy Free: Ditto the gluten. It was a pain, but we’ve found many ways to supplement his calcium through rice milk, vegetables and fruit.
  4. Sleep: 10 hours of sleep a night is crucial and a huge tic reducer.
  5. No artificial flavors or preservatives: My son is very sensitive to chemicals. They can set tics off like bees around a honey pot. Not worth the sting of excess tics except on special occasions.

2 Other Supplements * Talk to you Naturopath first * 

6. NAC  – Standing for N-Acetylcysteine, this is an amino acid that can be purchased at any vitamin store. This natural supplement acts as an antioxidant and glutamate modulating agent.

According to this webinar, featuring Dr. Mark Mintz, “They (a study) found the N-acetyl cysteine decreased symptoms of trichotillomania (hair pulling) compared to placebo. It makes theoretical sense as NAC can modulate dopamine. So, there are reports that NAC can improve mood disorders as well (such as obsessive compulsive disorder). There needs to be more research and reports to have a better handle on the effects of NAC in Tourette, but it appears to show some promise.”

7. Taurine – I talk about Taurine here. My son is currently on 500 MG but I think he could use 1000. That said, I will talk to my naturopath first!

What have been your experiences with tics? Did any of you find it made a difference for your children? What about in some of your cases where tics were more severe? Would love to hear!

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

New Pediatrics Tourette Syndrome Research Opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013

Study 4: Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome

Ages: 6-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit the following link: http://www.prnewswire.com/news-releases/neurocrine-announces-initiation-of-phase-ii-clinical-study-of-vmat2-inhibitor-valbenazine-in-children-and-adolescents-with-tourette-syndrome-300213365.html

Overlook Medical Center has additional Tourette Syndrome studies available

Study 1: Multimodal Dietary Treatment in Tourette’s Syndrome

Ages: 12-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

Patients with TS age 12-17 are eligible to participate. We are testing a group of dietary supplements that act to increase inhibitory chemical signals in the brain, detoxify environmental toxins, strengthen the body’s metabolism, and support brain nerve cell membranes. Subjects will also follow a Whole Food diet. The study lasts for 8 weeks and involves 3 visits to our office.

Study 2: A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

Ages: 18-64

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit the following link: https://clinicaltrials.gov/ct2/show/NCT02581865

Study 3: Ecopipam Treatment of Tourette’s Syndrome in Subjects 7-17 Years

Ages: 7-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit the following link: https://clinicaltrials.gov/ct2/show/NCT02102698?term=Ecopipam+treatment+of+Tourette%E2%80%99s+Syndrome+in+Subjects+7-17+Years&rank=1

 

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

Three research opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013

Study 1: Multimodal Dietary Treatment in Tourette’s Syndrome

Ages: 12-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

Patients with TS age 12-17 are eligible to participate. We are testing a group of dietary supplements that act to increase inhibitory chemical signals in the brain, detoxify environmental toxins, strengthen the body’s metabolism, and support brain nerve cell membranes. Subjects will also follow a Whole Food diet. The study lasts for 8 weeks and involves 3 visits to our office.

Study 2: A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

Ages: 18-64

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit: https://clinicaltrials.gov/ct2/show/NCT02581865

Study 3: Ecopipam Treatment of Tourette’s Syndrome in Subjects 7-17 Years

Ages: 7-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit: https://clinicaltrials.gov/ct2/show/NCT02102698?term=Ecopipam+treatment+of+Tourette%E2%80%99s+Syndrome+in+Subjects+7-17+Years&rank=1

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.

What’s A Tic? Part 3 — Treatment & Management

What Are Tics

There are multiple forms of treatment and management for individuals with tics:

  1. Medication – I’ve never needed medication myself, but for some people, medication is what really helps them get their lives back on track when the tics are too much to handle, and there’s nothing shameful about it.
  2. Diet – While I don’t believe diet will cure true Tourettes, I know that my tics get a lot worse when I don’t eat healthy food. The way I see it, your brain will only function as well as the fuel you put into it.
  3. Exercise – Because many tics are often related to anxiety, exercise is a great way to both lower anxiety and lower tics. After really strenuous workouts, I can often go 10 to 15 minutes where I don’t even feel the need to tic. (Heaven!)
  4. Behavioral Therapy – According to Tourettes Action in the UK’s article, “Behavior therapies and Tourette Syndrome,” behavior  therapy is being used to help some individuals with tics by helping them learn to be mindful of what their brains and bodies are doing.
  5. Deep Brain Stimulation – This is the type of treatment talked about in the video clip posted above, only used for the most severe cases, as it’s still considered experimental.

One of the most important parts of treating and managing tics is simply the diagnosis. Once you know you’re dealing with tics, it can be easier to pinpoint and manage with the help of a primary care manager, family, and friends. It’s also important to remember that a diagnosis of a disorder with tics isn’t the end of the world; we must remember that under the tics is still the individual, and that person is a beautiful creation of God who’s simply struggling with the burdens of life like the rest of us.

Do you have any information on tics that you’d like to share? What about questions? I’d love to hear your comments and questions, so please post them in the Comment Box below. Also, don’t forget that if you sign up for my weekly newsletter, you’ll get extra resources on neurological disorders, as well as a gift in thanks for signing up. Thanks for reading!

What’s A Tic? Part 2 — Tic Classifications

What Are Tics

There are different classifications for tics, motor vs. vocal (Do you do it with you muscles or with your voice?) and simple vs. complex (How many muscles groups are involved in the movement?) As I said in part 1 of this 3-part series, there are all different kinds of tics, so many that there isn’t a definitive list of what can be a tic and what can’t. Why? Because every person’s body and brain is different. This means the tics his brain comes up with will be different from those of his neighbor with tics.

I created this table based on information from Mayo ClinicTouretteSyndrome.net, the National Institute of Neurological Disorders and StrokeTSA-USA (one of the leading support groups for individuals with Tourettes in the United States), and my own personal experience:

Common Tics

The tics listed here are some of the more common tics found in people with Tourette. My first tic was blinking, which was then followed by throat clearing, Squeaking, and my lip touching tic. My tics showed up as many tics do. Rapid, repetitive blinking is seems to be considered the most common first tic that shows up in children with Tourette Syndrome or tic disorders.

There are more extreme versions of tics that can be found in more severe cases, however. Probably the most popular one is Coprolalia, or the infamous swearing tic, where individuals who suffer from this particular tic can blurt out socially and culturally inappropriate words and phrases. There are a few things to know about Coprolalia, however:

  1. Coprolalia is found in only 10% of people with Tourettes, according to Live Science’s article, “Why Does Tourette’s Make People Curse Uncontrollably?” (I’ve heard 5%-15% from other sources as well.)
  2. Live Science also says that Coprolalia is said to be caused by some form of neurological damage, although we’re not sure why yet. It can also be found in individuals with
  3. The individuals who do suffer from this disorder don’t do it for attention or fun. In fact, it can be highly embarrassing when it does occur, and as with other tics, must be treated with care and kindness.

Because Tourette Syndrome (and tic disorders) are on a spectrum, the severity of tics will differ in individuals. My Tourettes is fairly mild so my tics are generally manageable with good diet, exercise and self-taught management techniques. There are some individuals, however, who have symptoms so severe they interfere with safety and health, such as this young man here:

Medical Miracle Tourettes

Not being able to fix your child’s ADHD doesn’t make you a bad parent

I think this is why it bothers me so much when I hear people harp on parents of children with ADHD (or any neurological disorder for that matter) about not using a particular method that’s sure to “cure” a child of his disorder. And there are lots of promised “cures” out there. Here are just a few of them:

The Feingold Diet

Diet – In the 1960’s, Dr. Feingold began to tout the idea that many behavioral problems in people with ADHD can be linked to food sensitivities. The “Feingold Diet” eliminates artificial food coloring, artificial flavoring, Aspartame, and artificial preservatives BHA, BHT, TBHQ.

The results have been mixed. ADDitude Magazine, one of the biggest parental authorities on ADHD, says in its article, “Is the Feingold Diet an ADHD Cure?” that while some people have proven to be sensitive to certain food additives, such as red dye, there hasn’t been enough conclusive evidence to pronounce this as a surefire way to fix the disorder.

WebMD’s article, “Attention Deficit Hyperactivity Disorder: Alternative Treatments” says,

With elimination diets for ADHD, parents try eliminating certain foods from their child’s diet if they believe these foods affect the child’s behavior negatively. However, some experts theorize that behavioral changes can be noted in children following an elimination diet simply because of the way parents interact with the child while on the special diet.

I have met children with ADHD who are sensitive to certain foods, and eliminating these foods from their diets help a great deal. These foods aren’t always the Feingold foods, however. Often, they’re individual to the child. In general, however, eliminating these foods doesn’t “fix” the entire disorder. It’s just one step toward making it more manageable.

Essential Oils

The idea behind using essential oils to treat ADHD is explained by adlMD.com. According to the company, essential oils are used to stimulate the “parts of the body that are not functioning properly, restoring the body to its natural state.” It goes on to say that some particular chemicals present in essential oils might react with the nervous or muscular system to “encourage healing.”

Brain Balance Achievement Centers article, “Essential Oils for ADHD,” says that there are some essential oils that have shown some success in aromatherapy by helping calm children with ADHD, such as Ylang ylang, Vetiver, Frankincense, and Patchouli. (I’ve also read that simpler oils such as citrus, lavender, and mint can help with anxiety relief.)

Natural Interactions

The organization does encourage caution, however, when using any essential oils, particularly because there hasn’t been much research done on them, they aren’t regulated by the FDA, and they can cause skin irritations sometimes. Finally, Brain Balance says, “If used carefully you may very well find that essential oils enhance focus in children with ADHD and attention issues. Essential oils are not a cure, but it seems they can be used to calm your child and may help to improve concentration.”

I personally believe more research needs to be done on the use of essential oils.

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