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

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.

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.

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

Looking for guidance and support for my newly diagnosed son

My 12 year old son was diagnosed with Tourette in early 2015. He experiences mostly physical tics. He also deals with ADHD, OCD, some anxiety but mostly ODD. We live in a remote area with little to no support on this matter. I have researched and read all that I can, in addition to traveling many hours to a specialist which didn’t offer any help.

I am desperate to find some guidance, support and answers on how to help him, as well as our family, control his behavior. He is a loving, very intelligent, active person but his lack of impulse control and other classic symptoms get in the way of letting that come through.

Although it is difficult for me to share, I really need to try other avenues for help and think that this might be a great place to start. Who knows what doors it could open.

What are the chances that my son or daughter will have TS and OCD?

OCD (Obsessive Compulsive Disorder) or obsessive compulsive behaviors** (OCBs) and Tourette, as well as another tic disorder called Chronic Tic Disorder* (CT), often appear together. Research shows these conditions are probably genetically linked and as a result, we tend to see both conditions run in families.

Before we discusses the risks of being born with these conditions, let’s look at some general stats on TS and OCD:

  • 25%-50% of people with Tourette or Chronic Tic Disorder meet the criteria for a formal diagnosis of OCD
  • 80% of people with Tourette or Chronic tic disorder may have obsessive compulsive behaviors
  • 30% of people with OCD have a family history of co-occurring Tourette or Chronic Tic Disorder
  • A lot of recent research including twin studies, neuroimaging studies, and a genome-wide complex trait analysis, suggest that there is a significant genetic association between TS and OCD

A large study published in 2015 took a look at these two conditions. Here are some of the key results:

  1. If your oldest sibling has TS or chronic tic disorder plus OCD, you have a significantly higher likelihood of having these conditions.
  • The risk of having TS or Chronic Tic Disorder (CT) plus OCD was higher for people who had an oldest sibling who was affected by these conditions
  • People with an oldest sibling with TS/CT were 18 times more likely to have a diagnosis of either Tourette or Chronic Tic Disorder
  • Individuals with an oldest sibling with OCD, were 5 times more likely to have an OCD diagnosis than a person who does not have an oldest sibling with OCD
  1. If you have a brother or sister with TS or Chronic tic disorder, you’re more likely to have these conditions than other people.
  • If one of your siblings has TS or CT, you have a 9.88% risk of also having CT/TS
  • If none of your siblings has TS or CT, you have 0.42% risk of having CT/TS
  1. If you have a brother or sister with OCD, you’re more likely to have these conditions than other people.
  • If one of your siblings has OCD, you have a 4.01% of having it as well
  • If none of your siblings have OCD, there is a 0.84% you will have it
  1. For full siblings with Tourette (same mom and same dad), the chance that their brother or sister will have TS is greater than for half-siblings (either same mom or same dad).
  • This suggests that there is a genetic contribution or basis for TS/CT

What is does this all mean?

Simply put, this is what we know right now—if you have a family member with TS and OCD, you’re more likely to have TS and OCD, too. Your chances of having TS and OCD are a lot greater if your older sibling has these conditions.

Please share your experiences or tell us what you think about this!

 

*Chronic Tic Disorder or CT: the presence of either involuntary motor or vocal tics

** Obsessive compulsive behaviors (OCBs): Reports show that 11-80% of patients with TS have OCB

Sources:

Browne, H. A. et al. “Familial Clustering of Tic Disorders and Obsessive-Complusive Disorder” JAMA Psychiatry, 2015: 72 (4).

Carroll, Amber & Robertson, Mary. Tourette Syndrome A Practical Guide for Teachers, Parents and Carers. David Fulton Publishers: 2000.

https://www.tourette.ca/tourette-blog/pub:219/What-are-the-chances-that-my-son-or-daughter-will-

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.

Cresskill students get lessons about Tourette Syndrome from NJCTS Youth Advocates

NJ Center for Tourette Syndrome’s (NJCTS) Youth Advocates inspired, educated and spread awareness about Tourette Syndrome to a total of 1800 Cresskill, N.J., students from May 11 through May 15, as part of a weeklong TS awareness campaign in the district.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is estimated that 1 in 100 children show signs of the disorder—as many as 20,000 school aged kids in New Jersey alone. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, and learning disabilities. Kids with TS are at increased risk for bullying and report feelings of isolation due to their condition. NJCTS Youth Advocates share their experiences with TS and spread messages of encouragement, acceptance, and self-advocacy.

Drew Friedrich spoke about TS to over 600 high school and 400 middle school students on May 11. Drew is 22 years old, a recent graduate of County College of Morris, has been a Youth Advocate since 2012, and was a coach at the first annual Tim Howard Leadership Academy last August.

Drew did an amazing job connecting with the students and was comfortable in his skin, TS and all. He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion. Continue reading

52 Weeks of TS: Week 52

EDITOR’S NOTE: Over the past year on Tuesdays, noted Tourette Syndrome advocate Troye Evers has shared his “52 Weeks of TS” blog journal with the TSParentsOnline community. This is the LAST week of this series, so there’s a chance you missed one or 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.

Is it really here? Have we reached the 52nd week of this series? From doctor appointments to social events, from new tics to new jobs, I have expressed it all and I have learned and grown from the whole experience. I’m sad that I have reached the end, but excited for what will come in the future.

But I’m still led to ask, “Why do I do this to myself?” Why are there certain occasions that I still let fear and embarrassment rule my life and cause me to be this untrue version of myself? The answer is easy, it’s those judging eyes. It’s much easier when you’re dealing with a one on one situation, but when you have a room full of people looking at you, staring at you, judging you, it can be hard.

It brings me back to my school days, sitting in the classroom and having all my peers and teacher looking at me. The only difference now is that I have an explanation. I know what to say to someone who asks that dreaded question, “Why are you doing that with your head?” but there is still that fear of people asking.

The rest of the week went well, but just more running around and very little time to rest. Besides working, I also was planning a  dinner for my co-workers. I have OCD, and for some reason I think it would be a good idea to invite 10 people over to my house for dinner. Do I really want 10 people walking around my safe zone, spreading germs, making messes, and moving and touching my stuff?

Well, I guess it’s too late. I opened my big mouth. Having a dinner party with this amount of people takes a lot of planning and organization, which is fine with my OCD and anxiety disorder. However, did I really need to set the table a week before the party? Yep, a week before hand. My husband questioned me about why I set it so early and I explained to him that I did not have time during the week to do it. Really? The truth is I’m OCD. I had to set it up early enough so I would know it was perfect. Everything had to be in the right place, and I needed to make sure it was all organized correctly.

Despite all my OCD’s the dinner went very well. Normally with an event like this, I would have asked everyone to take off their shoes as not to spread the germs of the NYC streets all over my apartment, but I was not able to do this. About 30 minutes before everyone arrived, my husband shattered a glass top to a casserole dish. The glass flew everywhere. Besides the kitchen, I found glass in the hallway and living room. We tried to clean it all up, but I knew there still might be a piece somewhere. Now the decision has come. I would much rather the germs of NYC in my apartment than the chance of someone’s blood.

How does my mind go to this extreme? Am I really OK with dirt from the streets on my floor, but not blood? I mean I could always mop the floor and sanitize them to clean up the dirt, but what if the blood touched me? OK, I know it sounds insane, but for me blood leads to death. What if someone has some deadly disease and they cut themselves and then I cut myself? OK, it doesn’t sound insane, IT IS INSANE!

Basically, what I’m saying is that a broken glass in the kitchen will lead to my death. Are you kidding me? I know I need to calm down about some things, but this is how I am. Everyone came over and we had a delicious meal (and everyone kept their shoes on, so I’m glad to say the grim reaper will not be making a stop at place anytime too soon.)

As I reached the end of the week, I reached the end of this series. It’s been a wonderful year, and I achieved my resolution. I reached out to so many people and educated many of them. I opened my mouth and through my words, I learned more about myself. I think my resolution for the year to come is to not be afraid. To be myself.

The end.

52 Weeks of TS: Week 51

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 ONE week remaining in this series, there’s a chance you missed one or 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.

I have described my TS through analogies, poetry, honesty and fear, but the reality is that I have TS. I am Troye Evers and I have Tourette Syndrome. I don’t like my tics, but I’m going to own them. I don’t like my OCD, but I’m going to grasp it. It is an endless struggle, but it is part of me, it’s who I am. My TS has taught me so much, and helped me teach others.

It’s been about a week since I have stopped taking the Chinese herbs and I have not seen a change. Do I have to wait another four to six weeks for my tics to go back to normal, or am I stuck with these new tics? Out of everything that I have tried this year, the only thing that I have noticed to actually help is the fish oil.

I don’t regret anything that I’ve tried. It was all a learning experience. Therefore, something didn’t work for me. That’s the thing with TS; it is really about trial and error. Just because it did not work for me does not mean that it won’t work for someone else, but like 52 Weeks of TS, I think I’m near the end of my journey of trial and error. I could continue experimenting with different medications and other rumored helpful remedies or I can just accept what I was given. By accepting what I was given, I would make myself stronger.

As we venture deeper into the season, my OCD’s get worse. This is a normal thing, it happens every year. The media does not help me with this. The news is always reporting about how dirty and germ filled different places are. The other night they did a report on café’s and how germs are spread and how many there are. It’s really just gross. Do you realize how many people don’t wash their hands after going the bathroom? Then they will go to get their coffee and fill it up with milk. Now there is feces and urine on the milk that I’m about to put in my coffee. Just one more reason to never leave my apartment.

It’s things like this that makes my OCD and Germaphobia so bad. I don’t think I feed into it too much; it’s more the stupidity of other people. I walk around and watch people cough and sneeze all over the city with no cares of who’s around them. This week, I actually watched two examples of people’s stupidity like this. One was on my morning subway ride to work.

As I’ve already said, the subway ride is usually the hardest time of my day especially for my OCDs. One morning I was on the train and across from me was a mother with her son who was about three years old. I sat there and watched as the mother let her child climb all over the seats, then lay on the seats and put his feet all over the window. These feet that are all over the seats and windows are the same feet that have walked all over the city that is cover in bird feces, dog feces and rat feces.

This was not the end of it. After the little boy put his feet all over the window, he proceeded to get up, stand on the seat again and put his face and lips on the window that his feet were just on. The mother did nothing. Are you serious? It’s just absolutely disgusting. Now everything that your child has stepped in all over the city is now in his mouth. They soon got off the train and someone else sat down in the kid’s seat and rested his head on the dirty disease covered window. That poor unaware person.

This was not the only thing like this I saw this week. I also witnessed a woman walking down the street with a dead bloody pigeon. It looked as if the pigeon might have just been hit by a car, but really. Are you really just walking around carrying a dead pigeon with your bare hands? Pigeons are the most disgusting, disease-covered birds in NYC.

I’m not really fond of any birds, I think they are all gross, but pigeons are the top of that list. They eat anything, including garbage and I have even witnessed a pigeon eating a dead pigeon on the road. One of my friends and I used to call pigeons “rigeons” because they are rats with wings, and now this woman is walking around with it in her hand. The only question I have is, when is it going to be legal for me to walk around and spray strangers with my Lysol?

Yet I am still here, so I’m going to keep on keeping on. I have a bigger battle — educating people about Tourette Syndrome. Until next week, “I’ll tic to you later.”