Facing a new TS, ADHD, OCD & anxiety diagnosis

My name is Vanessa, and my 7 year old daughter, Angelina was recently diagnosed with Tourettes, ADHD, OCD, anxiety, and a possible language processing delay. Her symptoms are on the mild side.  I am new to all this and I have many questions. Talking to other parents going through the same thing is the best way to learn about all this.

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

The GreaTS have arrived!

TheGreaTS_NJCTS_BannerChange the world. Stand With The GreaTS! Join the global community to break down social stigmas, create awareness, and provide support resources around Tourette Syndrome. This is your chance to make a difference. Get involved today at standwiththegreats.org. Share your message of support using #standwiththegreats.

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.

Being a grandparent to a 15-year-old with Tourette Syndrome is a learning process

I am writing this post because I didn’t want to feel alone in my situation.

Being a grandparent to a young boy of fifteen with Tourette Syndrome is a learning process. He has come to live with my husband and I on a month-to-month basis. His home life with his parents is very stressful now, and I don’t know if it will change. I am concerned  for his future, I am home schooling him now. He is having a lot of difficulty with staying on task and passing tests. He also has ADHD. The medicine he takes does not get rid of his tics. The school that he had been attending tested him to see at what level his capabilities were and he is as low as you can score before being recognized as being disabled. He is between a rock and a hard place, he struggles so hard with school work, but doesn’t qualify for help academically.

I want to find out more about how his condition will effect his ability to have a happy and productive life. It was my understanding that children in his situation will need micromanagement their whole lives. If anyone can talk to me about this, I would really appreciate it.

Looking for wisdom from other TS parents

A few weeks ago, my 10 year old son started having continual vocal and motor tics from morning till night. I found the accelerated process from one day to the next of the tics appearing very overwhelming and frightening. I found his inability to get to sleep because the tics were keeping him awake unbearable. I found taking him to all of the tests of MRI, EEG, bloods,urine, alternative therapists, pediatricians, neurologist etc exhausting and expensive. We have a diagnosis of Tourettes Syndrome and I am struggling….a little less now as the acceptance sets in. Just wanted to connect with other Mothers who have been through a similar experience to get some wisdom from them about how to get through this one for him and me and to get any info about treatments that have worked for their children. Thank You.

ADHD – Another Day Having Discussions

I used to read that the “co-morbid” conditions of T.S. were far more frustrating than the tics themselves.

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As defined, co-morbid means the annoying other conditions that make you want to poke your eyes out with ice picks the simultaneous presence of two chronic diseases or conditions in a patient. For kids with Tourettes, this could be ADHD, OCD, Autism, ADD and insane awesomeness.

Stink deals with the last two on the list, and let me tell you, it’s been a crazy year. If I was able to guide him through the chaos, drama and joy that accompanies kinder through sixth grade, let’s just say that seventh grade has proven to be the final leak in a boat that was destined to sink without a major overhaul in the floorboard.

Having a kid with T.S. and ADD, while being a working parent with a little bit of ADHD herself (I know… biiiig shock) is kind of like fixing a boat’s floor while still on the water. It can be done, but the progress is slow (Not to mention tiring. How many buckets of water can you scoop and throw over the side while steering the ship and feeding the crew?)

The best bet to fixing that leak is to get that boat out of the ocean all together. Take a break from the swells and breathe while on dry docks. Get a professional boat repair man. Invest in his advice, buy the supplies to keep it fresh and clean once it’s back on the water, and absolutely join a hole-in-the-boat support group. After all, there’s a decent chance that at some point that hole in the boat will come back. You’ll want another mama to cruise by in her motorboat when this happens.  You’ll want that lifeline and the invitation to a cup of coffee in her well stocked cabin to catch your breath until your own boat works again.

Since life is not apparently perfect, I’m kind of stuck in the middle between shore and open water. I’ve been organizing my own life, to help organize Stink’s, and we’ve made progress. I am avoiding a lot of frustration by accepting life on life’s terms. I am not focusing on what he’s behind on in school. (Um, everything.) Instead, I’m focusing on helping him get caught up with the goal that he’ll be doing this himself at some point.

This means coming home each day after school and doing his work in the same spot. It means having him diligently utilize his planner so that he’s not relying on his own brain to remember every little detail of his “overwhelming” (his words) seventh grade schedule.

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The challenge with using a planner is that you have to remember to take your planner home. And then, here’s the real rub: you have to find it in the first place. And when that task seems too monumental, you just throw yourself on the floor and scream like a Carolina fan reach out to an educator who knows you’re doing your doing your best to help your kid.

Here’s an email exchange I had yesterday with one of his educators, minus the teacher’s name because, you know, these teachers have nothing better to do than stalk their ADD student’s mom’s blog.

Hi Teacher Fabulous-

The last piece of my kid’s organization puzzle is his missing planner. He is out sick today so when he’s back tomorrow I will have him check his locker. If it’s not there, is there an extra he can have? If not, I will buy one and he will be held accountable.
If there is any homework you need him to do today, please feel free to let me know. 
Thanks!
Andrea

 **
  
Hi Andrea,
I don’t have any extra planners.  I gave my last one away a few weeks ago.
We are practicing percents in a new packet today.  Do you want to pick it up later?  Let me know.
Thanks,
Teacher Fabulous
** 
 
Hi again –  
 
Yes, I will pick it up today after school if that works for you? If not, you can leave it in the office. Whatever is best. 

Can I just pick up a planner at an educational store?
THIS KID. He better get with the program or I’m returning him. I have books to write.
Andrea
**
Andrea – 
I have to supervise out front after school.  I’ll do my best to remember to bring it out there with me so you can get it then.  

I would make your own life easy and just go to Target or Walmart for a planner.  
There’s a thirty day return policy…..sorry, you can’t return him!  🙂
Teacher Fabulous
*** 
 
Oh for f***s sake. 

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

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