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

Goryeb Children’s Hospital Physicians Receive Tourette Syndrome Education

Often, residents and practicing physicians at hospitals have very little experience with Tourette Syndrome (TS) because little attention is paid to the inherited, misdiagnosed, misunderstood neurological disorder during their time in medical school.

Approximately 30 pediatric residents at Goryeb Children’s Hospital attended the June 2 Patient-Centered Medical Education (PCME) Program presented by the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) and walked away with a better understanding of TS.

Presented by the Nowacki family and College of New Jersey student Grace Hawruck, the PCME offered a general overview of Tourette Syndrome, which affects 1 in 100 children and adults.

Anna Nowacki and her sons, Joseph and Jacob, together with Grace Hawruk presented the NJCTS Patient-Centered Medical Education Program to more than 30 resident physicians at Goryeb Children's Hospital on June 2.

Anna Nowacki and her sons, Joseph and Jacob, together with Grace Hawruk presented the NJCTS Patient-Centered Medical Education Program to more than 30 resident physicians at Goryeb Children’s Hospital on June 2.

Anna Nowacki and her sons, Joseph and Jacob, spoke about their journey from discovery to diagnosis and finding support at NJCTS. Grace Hawruk shared her story of transitioning to life as a successful college student.

“It’s amazing how we as teenagers can teach doctors and residents,” said Hawruk. “Sharing our stories now can help doctors when they come across a patient with TS. Getting up in front of people and talking about my TS is a confidence boost and I always leave so proud of myself, other kids sharing their stories, and NJCTS knowing that we are making a difference in the Tourette community.”

The goal of the Patient-Centered Medical Education program is to help residents and physicians enhance their understanding of the perspectives, stresses, and needs of those with neurological disorders such as TS to improve patient encounters. NJCTS works with hospitals throughout New Jersey to present these education sessions. In addition to Goryeb Children’s Hospital, PCME presentations have been facilitated at Cooper University Hospital, St. Mary’s Hoboken University Medical Center, Kennedy Memorial Hospital, Children’s Specialized Hospital, and JFK Medical Center.

For more information about the Patient-Centered Medical Education Program, contact NJCTS Education Outreach Coordinator Gina Maria Jones at 908-575-7350 or visit www.njcts.org.

Next Wednesday Webinar “Tourette Syndrome: A Psychiatric or Neurological Disorder” is June 24

LOGO2Join us for our next webinar in the Wednesday Webinar series on June 24, 2015, from 7:30pm to 8:30pm.

Dr. Harvey Bennett and Dr. Joshua Braun will discuss “Tourette Syndrome: A Psychiatric or Neurological Disorder,” covering the neurobiology, genetics, and diagnosis of TS. They will also review behavioral and pharmacological treatments. They will focus on the neurological and psychiatric manifestations of this unique neuropsychiatric entity. By the end of the presentation the audience will be knowledgeable about tic disorders and their psychiatric comorbidities.

Dr Harvey Bennett was the founding director of the division of Child Neurology and Developmental Medicine at The Goryeb Children’s Hospital at Morristown Medical Center in 2005. In 2014 he stepped down from administrative responsibilities to pursue his clinical and research interests in neurodevelopmental disabilities. Dr Bennett is a Clinical Professor of Pediatrics and Neurology at The Icahn School of Medicine at Mount Sinai in New York City. Dr Bennett graduated from the Albert Einstein College of Medicine and subsequently trained in Pediatrics and Neurology at St Christopher’s Hospital for Children in Philadelphia and at The Hospitals of Albert Einstein in New York. He is triple board certified : Pediatrics, Child Neurology and Neurodevelopmental Disabilities.

Dr Joshua Braun is a full time staff child and adolescent psychiatrist at Morristown Medical Center in Morristown NJ. He is the director of the psychosomatic medicine service, as well as co-director for the Center for Therapeutic Brain Stimulation at Morristown Medical Center. Dr. Braun graduated from the Medical College of Georgia and subsequently trained in Adult Psychiatry at Montefiore Medical Center and Bronx Psychiatric Center before staying on to do a fellowship in Child and Adolescent Psychiatry at Montefiore Medical Center and the Bronx Children’s Psychiatric Center. He is double board certified in both Adult Psychiatry and Child and Adolescent Psychiatry.

Register for the webinar

After registering you will receive a confirmation email containing information about how to join the Webinar.

UPCOMING WEBINAR: February 25 on Sensory Issues at Home & at School

THIS WEEK’S WEBINAR

Making Sense of Sensory Issues – How to manage heightened senses at home and in the classroom

February 25, 2015

Presented by Dr. Michelle Miller, Psy.D., a New York State-licensed clinical psychologist who works at Therapy West, a group practice in Manhattan, and as post-doctoral fellow in the Tourette’s Syndrome Clinic at Rutgers University in Piscataway, N.J.

Over the years, parents and teachers have been increasingly attending to childrens’ sensory-related struggles; however, understanding and supporting sensory problems still remains unclear for so many people who work with children. Research also has suggested that 1 in 6 children are significantly impacted by sensory issues, further highlighting the need for this area to be addressed. This webinar is aimed at exploring what sensory issues are, how they look in different children and adults, and what can be done — both at home and at school — to help children with sensory issues thrive.

REGISTER FOR THIS WEBINAR »

Continue reading

52 Weeks of TS: Week 40

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 12 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

How closely is addiction to OCD? I guess it depends on the type of OCD you have. As I’ve said before, my OCD revolve mostly around germs and organization. With my OCDs I have created little addictions. I’m addicted to cleaning, addicted to the use of hand sanitizer, and a bad addiction I have developed, is a shopping and couponing addiction. I guess there are worse things to be addicted to, but it still has its effects on my life.

I could spend hours a day, organizing my couponing, and coordinating my next shopping excursion. You might think, what is wrong with shopping, especially if you have coupons? But I think there are times I go overboard. I only buy something if it’s on sale, and I have a coupon. It’s even better if I also receive a bonus store credit.

This week I went on my little shopping spree, I spent almost $700, saved about $300 on sales, $150 in coupons, and received a store credit of $150 to use on my next purchase. So all together, I spent about $100, but when I got home and looked at all the items, I just purchased and wondered how this tied in with my OCD. I sat there and looked at my stockpile. Do I really have a need for what’s in my stockpile?

  1. 11 jars of jelly
  2. 20 cans of Pringles
  3. 9 boxes of granola bars
  4. 10 boxes of dryer sheets
  5. 14 bottles of laundry detergent
  6. 5- 12 packs of paper towels
  7. 16 boxes of tissue
  8. 21 bottles of hand sanitizer
  9. 13 tubes of toothpaste
  10. 8 bottles of mouthwash
  11. 14 bottles of Nyquil
  12. 16 sticks of deodorant
  13. 13 bottles of shampoo
  14. 10 bottles of conditioner
  15. 19 bottles of body wash

This is just the half of it. The list goes on. Is this too much? Is this ridiculous? I think maybe a little.

Continue reading

UPCOMING WEBINAR: January 21 on Habit Reversal Therapy

THIS WEEK’S WEBINAR

Creative Applications of Exposure Therapy and Habit Reversal Therapy

January 21, 2015

Presented by Dr. Joelle Beecher-McGovern, a clinical psychotherapist at the Child & Adolescent OCD, Tic, Trich & Anxiety Group (COTTAGe) in the Department of Psychiatry at the University of Pennsylvania School of Medicine.

Cognitive-behavioral therapy has strong experiential support for a number of psychiatric disorders among children and adolescents. It includes several treatment modalities, including exposure therapy for pediatric anxiety and habit reversal training for tic disorders and trichotillomania. Despite the strong evidence for these treatments, they can be difficult for children and families to implement for a number of reasons, including logistical barriers, motivation issues and difficulties with follow-through in out-of-session work.

In this presentation, Dr. Hilary Dingfelder will briefly describe these treatment modalities and discuss some of the practical issues associated with implementing these treatments with children and adolescents. Dr. Dingfelder will then discuss some creative applications of these strategies to enhance these treatments for children and adolescents. Examples of areas that will be covered include:

  1. How technology can be used to supplement treatment (e.g., using the smart phone to monitor progress or supplement exposures)
  2. How to strengthen reward plans to improvement motivation
  3. Creative ways to enhance exposures with young children (e.g., through the use of games and puppets).

REGISTER FOR THIS WEBINAR »

Continue reading

Happily Ticked Off — The Book, Part 1: Dedication and Intro

Here  is the dedication and the first part of the introduction from my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.

As always, I’d love to her from you, too!

TOC

Dedication

This is for you, Mamas

When my son was diagnosed with Tourette Syndrome seven years ago, I encountered loads of disheartening information on the internet about tics, ADHD, OCD and disturbed children with behavior problems.

I found blogs full of victimhood stories and medications gone wrong.

I found a few helpful but ultimately dry informational books written from medical and nutritional view points on how to suppress tics through natural or pharmaceutical means.

What I didn’t encounter, however, was a book on humor, support and most importantly, hope.

So I wrote one.

This book is not just for mamas dealing with Tourette Syndrome. It’s a love letter for all you moms dealing with an unexpected diagnosis. It’s the book I wish someone had written for me when I was hopeless, angry, and feeling so very alone.

It’s my sincere hope that this book will serve as one giant hug for your fears. May it whisper into your heart, “You did not cause this disorder. You are strong enough to handle it. Your child is perfect despite some medical challenges. You are not alone. I am here. YOU CAN DO THIS.”

For all you mamas out there who are hanging by a thread, I’m asking you to tie a knot and hang on. Happily Ticked Off was written for you.

Continue reading

New test measures doctors’ ability to deliver patient-centered care

EDITOR’S NOTE: The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) has been delivering its Patient-Centered Medical Education Program to doctors, resident physicians and other health-care professionals at hospitals and education centers in New Jersey and Connecticut since 2010.

PHOTO COURTESY OF THE UNIVERSITY OF MISSOURI SCHOOL OF MEDICINE. University of Missouri School of Medicine second-year student Mitch Tarka interviews standardized patient Sarah Squire Weber while practicing patient centered care skills at the Russell D. and Mary B. Shelden Clinical Simulation Center.

When health-care providers take patients’ perspectives into consideration, patients are more likely to be actively engaged in their treatment and more satisfied with their care. This is called patient-centered care, and it has been the central focus of the curriculum at the University of Missouri (MU) School of Medicine since 2005. Recently, MU researchers have developed a credible tool to assess whether medical students have learned and are applying specific behaviors that characterize patient-centered care.

The researchers first worked with real patients to identify a list of specific behaviors that demonstrated physicians were providing patient-centered care. By defining these detailed, specific patient-centered behaviors, the researchers have been able to tailor the educational experience at the MU School of Medicine to help students gain these skills.

MU medical students now are assessed on their ability to deliver the care in ways the patients expect; students must perform at a satisfactory level on the patient-centered care exam to graduate from the MU School of Medicine.

“The test forces the future physician to go beyond just determining a diagnosis and to focus on behaviors that play an essential role to the effectiveness of the care he or she provides,” said Kimberly Hoffman, Ph.D, associate dean for curriculum and assessment, and research associate professor of family and community medicine at MU.

Hoffman is the author of a study describing how the assessment tool for patient-centered care was developed at the MU School of Medicine. In the article, Hoffman also outlines a process for having patients validate the assessment.

Continue reading

The experiences of diagnosis in adults with Tourette Syndrome

TS is a clinical diagnosis, meaning that there is not a specific test for the disorder, it has been noted to be difficult to diagnose with research showing delays in the diagnosis of TS (Wand et al., 1992; Freeman et al., 2000; Shilon et al., 2008). Cultural factors may also play a role in the social perceptions of TS and differences were found between cultures regarding the impact of TS on quality of life (Mathews et al., 2001; Zinner et al., 2012).

Very little research has looked at the subjective experience of having TS and as far as the author is aware there are no studies which have investigated the reasons for wanting or not wanting diagnosis in TS and whether having a diagnosis is a positive or negative experience for those with the disorder.

Looking at neurodevelopmental disorders such as autism spectrum disorders, attention deficit hyperactivity disorder and motor disorders, it appears that there are a range of advantages and disadvantages related to obtaining a diagnosis of a neurodevelopmental disorder. Significant disadvantages relate to the lack of a cure and the stigma associated with the disorder and the significant advantages are related to help and support following diagnosis and greater understanding of the disorder.

The aim of this research was to find out the experiences of those with Tourette syndrome (TS), specifically what having a diagnosis means and whether it this is useful for those with TS.

Method – Nine adult participants with TS were recruited through Tourette’s Action. Semi-structured interviews were completed either face to face or via telephone and the resulting transcripts were analysed using thematic analysis.

Results – There were three main themes resulting from the data: Continue reading

UPCOMING WEBINAR: November 12 on getting kids motivated for school

THIS WEEK’S WEBINAR

Getting Kids Motivated for School: Strategies to foster your child/teen’s motivation to achieve in school

November 12, 2014

Presented by Dr. Graham Hartke, is a licensed psychologist in private practice in Roseland, N.J.

As our schools continue to increase curriculum, testing, and workload standards, many kids and teens are struggling to stay motivated in school. These are students who do not like school, struggle to complete homework, procrastinate often, have slipping grades, are bored, say they “don’t care about school”, avoid school work, get in trouble, are disorganized, and/or feel disconnected from classroom learning.

This webinar focuses on strategies parents and educators can use to increase student motivation to succeed in school. Strategies will address the causes of low motivation, learning difficulties, improving the homework process, improving organization, and reducing procrastination.

REGISTER FOR THIS WEBINAR »

OTHER UPCOMING WEBINARS

 

Bullying & Vulnerable Populations

November 19, 2014

Presented by Nadia Ansary, Ph.D.

More information about this webinar »

Monsters, Robbers & Nightmares, Oh My! Simple Ways to Improve Your Child’s Sleep

December 3, 2014

Presented by Courtney Weiner, Ph.D.

More information about this webinar »

Continue reading