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

Who will you be in the face of your child’s differences?

During my yoga practice this weekend, my teacher Jess shared something that got me thinking.  She said that at the end of her pregnancy with her twins, she was up 80 pounds and feeling out of sorts with her body.  I can only imagine.  Jess’ friend, whom I assume is another yogi, commented on how wonderful this was.  Jess must have looked at her dumbfounded.  What could be great about all this weight gain?  About feeling like her body was alien to her?  About knowing what lay ahead to get back in shape once she gave birth?  Jess’ friend explained further.  She said that now Jess had the gift of understanding her ill, overweight and out of shape students in a new and profound way because she herself had experienced something similar.  Looking at Jess today you’d never know what she went through.  When she teaches though, she shares her experiences from the heart, relates from a place of purity and connection to all of her students no matter where they are with their practice, their body, their mind.  It doesn’t matter.  It hit me that this level of empathy and ability to support her students through the actual asana and the emotional blocks is possible because of Jess’ journey, not in spite of it.  No training or book could have prepared Jess the way personal experience has.  So why do I share this story you may wonder?  Simply put, I see my own journey in Jess’.

In June of 2010, my 5 year old daughter was diagnosed with Tourette Syndrome.  The diagnosis came after months of desperately trying to figure out what was wrong with her.  The months leading up to the diagnosis were filled with doctor’s visits, conversations with other parents, reading books and of course MANY Google searches on tics, anxiety, rage disorder, neurologists, vitamin regiments, dietary changes…  I felt alone, petrified of the future, dreading the diagnosis I was pretty sure we’d be getting.  Continue reading

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.

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.

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.

“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.

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.

Concerned about my son’s Tourette Syndrome, OCD, and ADHD

My son, Anthony, has Tourette Syndrome. Anthony is 9 years old and started displaying mild tics around the age of 3. The tics would wax and wane, the severity of them never being bad enough to be disconcerting to Anthony or myself. He did very well in school, was very sociable and was always on his best behavior.

Then came second grade. About halfway through the school year Anthony’s tics got worse, going from simple to complex and including phonic as well as motor tics. His behavior also began to change. He became more disagreeable, argumentative and began to be disruptive in class. He grades started declining and his teacher expressed concerns about his well being and self esteem. We went to the neurologist again and this time they diagnosed him with Tourette Syndrome.

Anthony also began displaying obsessive compulsive behaviors and was then diagnosed with OCD. The OCD got to the point that it was far worse than any of the tics he displayed and was extremely unsettling for Anthony. He began CBT to help him say no to OCD and gradually it got better. It hasn’t disappeared, but is much better than it was. In the midst of all this, we also had reasons to believe that he also has ADHD. His reading and writing skills have plummeted; he cannot retain anything that he reads. He is unable to sit still and focus in the classroom and is disruptive to his schoolmates. Even watching a movie at home is difficult, we have to constantly rewind because he missed something. At first I thought it was because he was giving so much energy and concentration into just getting through the day trying to manage the symptoms of the Tourette and OCD. But, the psychiatrist said that we’d be able to tell the difference with appropriate evaluations. So, we did the evaluations and and he had very high markers for ADHD.

So, Anthony has Tourette Syndrome with co-morbid disorders of OCD and ADHD. I have chosen to take a natural approach to treating his symptoms as I couldn’t bear the thought of all the negative side affects he’d experience being on the prescription meds. He has a very strict diet and gets a lot of exercise (he is on a travel hockey team), he takes homeopathic and herbal supplements as well as vitamin and mineral supplementation. He takes magnesium chloride baths several times a week and I do deep massage therapy a couple nights a week. He also has sensory issues and so we do dry brushing and have a weighted blanket for sleeping. I have seen an improvement with his tics and anxiety levels but it hasn’t helped his focus or retention.

I’m also now seeing his disorders affect him on the ice as far as being able to follow the play and know where to be. Hockey was his one safe place where he always felt at his best. Now, that is suffering too and it’s very upsetting to him. He hasn’t made the connection, he just keeps saying he is in a bad slump. His symptoms also seems to be cyclical in their severity, with the Fall/Winter being the worst and the Spring/Summer the best. I contribute this to a build up of anxiety as the new school year begins, but I am not positive.

I’m at a point where I’m now considering trying medication as I do not want to see him struggle another year, barely getting by in school, nor do I want to see his game start to decline because hockey means everything to him. Before the onset of the Tourette, OCD and ADHD he was always ahead of grade level with everything. I can see that his self esteem is suffering a bit and that hurts the most. He is such a wonderful, caring human being. I want him to accept himself for who he is and embrace his struggles, as I know in the long run they will make him stronger. But, I also want to help him in any way that I can without harming him in the meantime. I don’t know anyone with a child who has similar issues and so I wanted to find a group that could relate to what we are going through and from which I might gather new ideas for approaching the treatment of his symptoms. I just feel very lost and very frustrated at the moment and I wish that I had some help in making these tough decisions.

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.

Happily Ticked Off — The Book, Part 6: Chapter 3

At long last, here is Chapter 3 of 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 hear from you, too!

TOC

Chapter 3 — ScholasTIC

Your TS Child (And you, freaked out mama) 

Will Surive Grammar School

Five Years Later

Fourth grade started out like third grade. It had only been three weeks and I’d been stopped by the teacher three times. The first incident was innocuous enough.

“Mrs. Frazer!” Nicky’s teacher, Chris, called to me with a smile.

I internally kicked myself. “All this could have been avoided if I’d picked him up in the carpool line. This thought was quickly replaced with, “Just because you avoid an issue doesn’t make the issue go away. It just prolongs it.”

I had one more thought that went something like, “Stop talking to yourself and pay attention to the teacher- ooooooh, a hummingbird!” at which point I directed my concentration where it belonged. Turns out, if only Nicky had done the same thing, I wouldn’t be standing in the blue door frame of an elementary school room on a Friday afternoon.

“Nicky had a hard time focusing today,” he informed me.

Last year, upon hearing similar words from his third grade teacher, my face dropped like a bad L.A. facelift. I was crushed. Four years into his TS diagnosis, his tics were still pretty minimal. With his penchant for pink umbrellas and impromptu standup routines, I knew he’d never be an academic soldier, dotting his i’s and crossing his t’s with laser like precision. But I was still holding on to the hope that Nicky’s eccentricities wouldn’t mark him as different.

Continue reading