New Pediatrics Tourette Syndrome Research Opportunities at Overlook Medical Center

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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

 

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

Two 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 Phase2a, Open-Label Trial Evaluating the Efficacy, Safety, and Pharmacokinetics of Orally Administered SNC-102 in Adult Subjects with Tourette Syndrome

Ages: 18-75

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/NCT02217007?term=synchroneuron+tourette%27s&rank=1

The Best Things to Eat if You Have Tourette

We’ve had several entries on the Tourette Blog about what you shouldn’t eat. It’s time for a little positivity!

Today, we take a look at what you should eat if you have Tourette Syndrome. Like all the questions we tackle here on the Tourette Blog, there is no simple answer for those asking about the best things to eat if you have TS.

There is a lot of information out there about what people should or shouldn’t eat in order to be healthy, lose weight, build muscle, etc. etc. It is easy to become confused and to end up with more questions than answers.

The reality is that there no one size fits all diet. You should consult a doctor and possibly a dietician for customized advice to make sure your diet is healthy and that you are taking into consideration any medical issues, allergies or food sensitivities.

On the whole, it is important to eat food that will strengthen your immune system, help keep your blood sugar levels steady and give your body the nutrients it needs. Such foods can include:

  1. Flaxseed, olive or canola oil (contains essential fatty acids)
  2. Blueberries, cranberries or other antioxidant-rich foods (repairs damage, strengthens immune system)
  3. Carbohydrates like legumes, peas, or whole grain cereal (for energy)
  4. Protein including fish, poultry, or natural soy products (helps keep your blood sugar under control and builds your cells)
  5. Water (makes us 60% of your body and almost 70% of your brain)
  6. Non-processed food (higher in nutrients)

It may surprise you to learn that people with TS do not always eat well. On the contrary, one 2015 study found that the individuals with TS that they examined had “unbalanced” nutritional intake. This included not having enough protein intake compared to nutrient intake and inappropriate ratio of fat to carbohydrates.

What is your diet like? Do you eat the foods listed above? Do you eat anything specifically to help with your Tourette?

We want to hear from you!

 

Sources:

Sheila Rogers, Natural Treatments for Tics & Tourette’s:http://www.amazon.ca/Natural-Treatments-Tics-Tourettes-Patient/dp/1556437471

Liang et al. “Evaluation of dietary behavior and nutrient intake in patients with Tourette Syndrome” The Journal of the Federation of American Societies for Experimental Biology.http://www.fasebj.org/content/29/1_Supplement/911.16.short

Research opportunity at CHOP

RESEARCH OPPORTUNITY: Help advance knowledge on Tic Disorders and earn $50! Seeking children and adolescents ages 8-17 with CTD or TS to participate in a 2-3 hour research study conducted at CHOP. The study investigates brain mechanisms associated with controlling repetitive behaviors. Please visit http://www.patsainc.org/Tourettes-Info/Current-Research-Opportunities.aspx or contact Kathryn Roberts, M.A. at robertsk2@email.chop.edu for study details or to sign up.

CoRH

The Tic Toc Stop Orthotic: The Tic Guard

TicTocStop is dedicated to the science side of TS and finding a cure.  We’re supportive of the medical community and all efforts to combat and find a cure for Tourette Syndrome, but we do more than look to fund general research.  We are actually coming up with and finding new ways for people to cope with this afflication and taking the steps necessary to gain medical validation.

The Tic Toc Stop Orthotic: The Tic Guard

We came up with an idea of an orthotic — a mouth appliance that potentially has the effect of mitigating the frequency and severity of tics associated with TS.  It’s a new idea in treating the effects and we’re proud of the work we’ve done as a team to design and develop this idea to the point where it is a real product now undergoing Clinical Study.

>> Read Craig Carton’s announcement letter.

>>We’re actively seeking volunteers to take part in the study. Sign up to be considered as a Clinical Trial Participant.

The University of Tennessee Clinical Study 

We knew that the Tic Guard was a good idea and were encouraged by our own informal testing and results.  So we didn’t stop there…we found a terrific partner in the University of Tennessee Health Science Center, and got the FDA’s approval to initiate a full Clinical Trial. We really believe the results will prove to be life-changing for People with TS.  Read More about the Clinical Study here.

Sign up to be considered as a Clinical Trial Participant.

Continue reading

CBIT Explained, Part 3: Who should take CBIT?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics. See part one here and part two here.

CBIT is ideal for individuals who feel they have one or more bothersome tics (not a tic that bothers someone else, but rather a tic that causes the individual discomfort, distress or difficulty).

CBIT also requires a self-aware individual. Self-awareness in children matures at about the age of 10 (+/-2 years), at which time they become aware when they tic or are about to tic (the premonitory urge).

Unfortunately, trained and certified CBIT therapists are limited in number and can be difficult to locate. By contacting a local TSFC affiliate (or, if you live in a place such as New Jersey, the NJ Center for Tourette Syndrome), you may learn if a CBIT therapist is practicing in your area. If there isn’t, let your own doctor or therapist know that CBIT training is available. When more people alert local medical professionals that CBIT therapy is needed, the number of competently trained CBIT therapists will increase.

References:

1) Cook CR, Blacher J. Evidence-based psychosocial treatments for tic disorders. Clin Psychol: Science and Practice. 2007;14(3):252–67

2) http://www.cdc.gov/ncbddd/tourette/treatments.html#CBIT

3) NJCTS Webinar April 23, 2014 Dr. Lawrence W. Brown MD, Pediatric Neuropsychiatry Program, The Children’s Hospital of Philadelphia

4) Behavior Therapy for Children With Tourette Disorder

5) Randomized Trial of Behavior Therapy for Adults With Tourette Syndrome

6) Canadian Guidelines for the Evidence Based Treatment of Tourette Syndrome Page 66

Major input from:

CBIT Training, Dr. Douglas Woods PhD, Professor and Department Head, Department of Psychology, Texas A&M University

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.

CBIT Explained, Part 2: How does CBIT work?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics.

Studies published in peer reviewed journals have demonstrated the effectiveness of CBIT (part 1).

It’s thought to work by strengthening the neural pathways between the basal ganglia and the prefrontal cortex of the brain. The basal ganglia is the region of the brain where Tourette Syndrome is thought to originate by the spontaneous release of unwanted muscle actions, while the prefrontal cortex is the region of the brain where voluntary control over our actions occurs.

CBIT breaks the premonitory urge → tic → relief feedback cycle by implementing a Competing Response (CR), an action that’s less conspicuous than the tic itself and can be performed without any external aids or devices.

(Please note that even though behavioral therapies like those involved in CBIT can help reduce the severity of tics, this does not mean that tics are just psychological or that anyone with tics should be able to control them—tics due to TS are very much neurologically based and involuntary. CBIT is not  “Stop It” therapy, but rather “Do Something Else” therapy.)

In time, usually after a few of months of applying the CR combined with the other comprehensive components of CBIT, most children develop the ability to manage their tics to their satisfaction.

Having learned the techniques taught in CBIT, the child is then able, usually on their own, to develop their own CRs for other bothersome tics, and continue using the relaxation strategies and the knowledge gained from understanding their tic triggers to more effectively manage their symptoms throughout their lives.

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.

CBIT Explained, Part 1: What is CBIT?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics.

CBIT (pronounced see-bit) is a non-pharmacological treatment for Tourette Syndrome.

It combines six strategic therapeutic components in the form of a clinically proven, comprehensive therapy to help a person with Tourette Syndrome manage their tics, including:

  • Psychoeducation: Examining what situations tend to make tics worse and what situations make tics better. A person can then use this knowledge to avoid the situations that exacerbate their tics or find ways to lessen their impact. They might also seek out situations that lessen tic activity.
  • Self-awareness training: Learning to recognize signs that a tic is about to occur. Tics are usually preceded by a premonitory urge which is the key to knowing when a tic is about to be expressed.
  • Relaxation training: Acquiring strategies for minimizing stress and managing tics. Examples include deep breathing, progressive muscle relaxation and guided imagery.
  • Tic Analysis: Identifying a person’s most bothersome tic (Note: not the tic that bothers someone else,but rather the tic that causes individual the most discomfort, distress or difficulty). A CBIT therapist helps the individual to recognize any premonitory urge or urges that precede that particular tic. They then break down the tic into its components (i.e., the precise muscle movements involved in the tic from start to finish).
  • Competing Response (CR)/Tic Blocker: Responding to the urge to perform a particular tic with an action that’s less conspicuous than the tic itself and can be performed without any external aids or devices. For example, if a person with TS has a tic that involves head rubbing, a new action might be for that person to place his or her hands on his or her knees, or to cross his or her arms so that the head rubbing cannot take place. Once a person identifies a CR for their bothersome tic, they perform the CR whenever they experience the urge to perform the bothersome tic, until the urge passes, usually in a minute or two.
  • Social support: Getting encouragement and assistance from family, friends and educators. Parents may have to advocate on their child’s behalf at school to alert teachers about a child’s needs. Positive reinforcement at home is also important for children. When a child employs the correct CR, they should be praised. If they happen to miss using the CR and the tic emerges, parents need to remind the child about using the CR, not in a punitive tone, but in a supportive and encouraging one.

CBIT does not cure Tourette Syndrome or eradicate tics; rather, it provides strategies to help manage tic symptoms and lessen their impact.

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.