LETTERS

This section is devoted to correspondence we receive from members and the public in relation to Tourette Syndrome. All appropriate letters are answered and a few of general interest are selected for publication. We would however, ask that you read the Disclaimer on this page so that you understand no medical advice nor treatment is implied. Answers are meant as support and information only. Your own physician should always be consulted in relation to any change in treatment or medication.


HI,
I have just found your website and have paid for a three year subscription
This is a bit about me and why I joined


I am the adoptive Mum of my 12 yer old son James who has a brain injury due to asphyxia at birth. he was on life support for some weeks.
His family left him and we adopted him when we discovered him the following year. He is my pride and joy and the bravest child I have ever known. Diagnosed with Autism & Cerebral Palsy he has difficulty swallowing and has a gastrostomy button for feeding. He also has bony tumors and Epilepsy.


I need to understand more about TS. My sons first symptom was bobbing at the waist when walking..very dangerous for a child learning to walk!! He was about 5 then. Then he began to clear his throat. The tics would last days or weeks and then be replaced by another...kissing sounds...sudden shouting etc. Then James began to swear which has upset his teachers. When he is in a new environment he can lick his hands or pace and sometimes hold his head and wail.
When he's calm James doesn't seem to do any of these things. Where does his Autism start and end? Where does his OCD start and end? I think a lot of his odd behaviours are TS more than anything else. At present he needs to straighten anything out of place, drawers, doors even shoe laces. He also has quite servere echolalia having to ask over and over the same question and if he hears it said enough times on TV he starts to say it over and over (eg Lisa Simpson says over and over "Are we there yet?"....so in the car, James will do the same....told to stop, he can't seem to resist the temptation to continue and gets a thrill out of continuing...(like a dare would to someone else).


James has a great sense of humor and an amazing memory and ability to read and recite whole stories. That is what gets us all through....but I need some support with this strange life we both have.
Thank you
Jayne




Hello Jayne,
Thank you for your email. Both your son James and yourself sound amazing. You have had to go through so much and the hurdles you have overcome are huge. Firstly I commend you on your ability to understand so much already and search for information. As you already know TS is a complex disorder and your questions of where does one disorder start and another one end are common ones with people with TS. Especially where OCD is concerned. It is very much the question of the chicken or the egg! TS has many overlaps and links with many other comorbid conditions. TS + OCD is possibly the hardest combination to manage. TS is so often accompanied by other comorbidities such as ADHD, OCD, Anxiety Disorder etc., but I believe that TS + OCD is likely to provide the biggest challenges, and often this occurs in the brightest of young people, making it doubly difficult. Happily, all the latest research points to there being lots of success with specific strategies and/or medication. OCD seems to respond very well to one or all of these as it is an anxiety based condition. The anti-depressants have proved to be quite good in managing this. When combined with cognitive behaviour therapy, often very good results are achieved and for those who really do not want to medicate (which I understand completely) the latest research tends to show that the behaviour therapy is almost as effective without medication.


James at 12 years of age is hitting puberty which is a doubly difficult time for those with TS. The flood of hormones at this time of development carries with it new genes which commonly exacerbate TS at this time. Basically anything you can do to reduce stress and anxiety will help reduce the symptoms of TS and other related conditions.


TS falls under the umbrella of the autism spectrum so there are many overlaps there which may help you see their connection. TS is in most cases genetic in origin although in other cases appears to have been caused by brain injury (Possibly James’ case) and another area being looked into for causes is PANDAS (Paediatric autoimmune neuropsychiatric disorders associated with streptoccocal infection).
...............
I would like to point out our education awareness program as we are offering every school in Australia a FREE DVD called "what is Tourette Syndrome?". All your son’s school needs to do is contact us with their contact name and postal address and one will be sent. A short 20 minute viewing of this in a staff meeting could make all the difference to James being understood. The teachers need to understand that the child does not want to display these symptoms. They are something he simply must do! It is unfair for them to expect him to be able to stop his swearing, however they may come up with ways to assist him in masking them. IE: Allowing him to leave the room when he needs to to release that tic, or to use him to carry out errands which enable movement which helps relieve stress and the build up of tics.


I hope this gives you plenty of information to start with. Don't hesitate to write again should you need any further information.


Kind regards,
Robyn Latimer



Dear Robyn
Thank you so much for your email and the info as well as the info package. Sorry I have taken a while to respond, I have been trying to absorb the information.... the advert on TV has certainly sparked interest. TS makes far more sense now. It's like a door has suddenly opened and I can now see and understand some of my sons odd things he does which did not seem typical of Autism. I know that every person with Autism is different as it takes into account their environment and personality etc. but there seems to be a similarity between people with Autism James doesn't have....he does better under stress, better with very firm boundaries and even a stern voice (unless you alter your voice then he cracks up laughing)...James has an endearing personality and a great sense of humour and he loves being around people...James knows when I am tricking him and he reads people really well. I think his Autism is more Autistic features and the ADHD and TS is more of a nuisance for him than the Autism.

Medication works very well for James now (after trial and error over the years). Before his morning meds he's like a bundle of moving, noisy string blowing around in the wind....20 minutes after meds he suddenly calms & stops his endless movement and noise and focusses on what he's doing....the biggest help was putting him on Concerta so he didn't have swings during the day on the Ritalin as it wore off. But we still had a repeat of the restlessness at night until one Peadiatrician suggested we trial a Ritalin tablet at bedtime. There was the difference!....he now settles with an incredible difference.
He was also put on Risperdal as a trial but with much consideration as it can make TS worse I believe. James went from rubbing skin off his face and stimming to the point of exhaustion to being able to cope in a changing and uncertain world. Each month now I see big changes occurring...this morning he came into my office and began to pace until I invited him to sit on an office chair. James looked thoughtfulfully at a seashell I had on my desk and he asked me what it was..then...where did I get it, then... who gave it to me...then he asked me would it float!!! I answered him with controlled delight...can you just picture the difference in my sons communication and skills? I told him he should be very proud of himself and of course he agreed :-)


Did you watch the second episode of HOUSE last night? The little boy with Autism who had a worm infestation from him eating contaminated sand? Made me feel like I need to worm my son!!! Three things stood out to me...1: The difference in the childs behaviour with appropraite communication from carers 2: The striking differences between him and James and 3: The total love and dedication parents give because our kids need us, they need our love, determination, advocacy and strength.


It was interesting to read what you said about auto-immune issues....James is allergic to Latex and has a severe chemical allergy to many products like kiwi fruit, ink, creams, lotions, soap etc. and has had anaphalactic allergy responses. We are waiting to see and immune specialist. He has seen a skin specialist for his urticaria and warts. As soon as his warts clear up with treatment they flair up again with gusto. His immune system seems compromised as he gets infections occassionally which are persistant and require several lots of antibiotics. he's had septicemia twice. I believe there is a link.
Thank you for your dedication and strength, I am very glad to have your support....please tell the little boy in the ad for us...he is an inspiration!


Kind Regards
Jayne



Hi,


I am a workplace trainer for disability services and am following up on a query from a participant in a recent session. Although we provide services to people with intellectual disability and that is what our training focuses on, some of our clients, just as in the rest of the population, also have other disorders and as a result of one person’s experience the subject of Tourette's came up.


I was asked by the person "why do so many people with Tourette's swear rather than say other words instead". As I only have limited experience and knowledge in Tourette's, I undertook to see if I could find an answer to this question, I find it quite an interesting question. I did make it clear to the group though that not all people with Tourette's who have vocal tics that manifest as coprolalia.


It has also crossed my mind that coprolalia may not be more common than other vocalisations, but thanks to sensationalism by media and or the nature of coprolalia being a bit of an attention grabber so to speak it just appears to be more prevalent in people who have Tourette's and suffer vocal tics.


If you have any information that could enlighten us on this query, it would be much appreciated.


thank you D.B.



Hi D. B.,


Thank you for your email and enquiry. Your student’s question is a very good one and one many doctors would like to know the answer to also!


Coprolalia is as you predicted not as common as the media makes out. It is just one of the many tics experienced by those with TS. Coprolalia presents in around 10-15% of those with TS. Unfortunately the media has siezed this tic in particular because of the sensational nature of it.


The question as to why swear words are chosen is also a very good one, however It is not always swear words, it can be any word that is considered obscene or in fact the worst word for that particular person.Chosen is in fact the wrong term as they have no choice in the matter. In most cases it is the exact opposite of what the person would really want to say. Think of the word you would most NOT want to say and that would be it for you! For some people this is a racial slur, or a phrase about their mother or someone they in fact really care about, or a single swear word. It in no way represents the person’s true feelings or ideas. It is random, involuntary and not directed at anyone or used in anger.


Many other words are presented as tics with TS also. These are not called Coprolalia but are in the category of vocal tics. They could be Palilalia (Repetition of one’s own words), or Echlolia, (repetition of other’s words). In fact to be diagnosed with TS one has to have at least 1 vocal/phonic tic present.


TS is a very complex condition and a basic explanation is that the TS brain is overstimulated with chemicals (neurotransmitters) which spill over and travel through the nervous system bypassing filters in the brain that would otherwise 'turn off' unwanted sounds and movements. The person with TS cannot help making these sounds and movements, it is a physical condition in the same way Asthma and Diabetes are physical.


I have attached some more information for you to give you more detail should you like to know more. Please feel free to contact us anytime.


Kind regards, Robyn Latimer





Giving back to the TSAA!


Hi, My name is Chad Dunn and I have a Brother named Corey Dunn. I used to attend some of your gatherings when I was growing up with Corey when he was younger as support for him with my Mother. I found the meetings most overwhelming and I always promised myself that I would help when I had the chance, not only financially but also in awareness of tourettes.


My Brother is one of the lucky ones as his Tourettes has actually tamed in later years. He is now 23 and works on a Super Yacht as a Deckhand in Monaco for one of the worlds wealthiest men and he has become quite privileged to have done so.. I am fairly proud but it is also a testimate that with lots of awareness and support Tourettes will not stop you from achieving your dreams and goals, Corey tells everyone he meets before he shakes their hand (and taps them 3 times!) that he has Tourettes and I believe that's half his battle won there and then.


About eighteen months ago Corey came to me and asked me to leave my job in Finance in Sydney and travel with him to France to become a Deck Hand aboard Super Yachts, I wasn't happy at the time in my current position, so I did and never looked back. I traveled the world and was paid quite well for the experience until recently when I gained an injury and had to take time out. During that time out I created a website www.deckiesmate.com and also an e-Book written of my experience and how individuals can enter the Super Yacht Industry.


The site is live on Saturday 11th January 2009 and I wish to have a link to TSAA and a page on Tourettes on my site supporting and informing people of the cause, we plan on having TSAA as our main Charity we support. I am not sure how many of the books will be sold, However I am happy to donate 10% of the book sales to the TSAA.


The site will be advertised from next week on every major job/career website in Australia, New Zealand, America, South Africa for January and February, as well as Facebook/Myspace then in the UK in February - March 09. I expect large numbers to at least enter the site to see what it is about. The TSAA link will be on the main page that then goes into an attached document in more detail.


Have a great week. Kind Regards, Chad Dunn




Letter from Corey


Hi Robyn, That sounds great if you would put Chads letter on the website or newsletter. It would have been great to come to one of the seminars though i cannot make it because i am based in Monaco on the boat and travel around the globe.


Throughout my life since being diagnosed with TS, i have been very open about it and i personally feel that has made me a stronger person and more comfortable with who i am. It also shows people that it isn't a disorder to hide behind. Whenever i meet people that i don't know i inform them i have Tourettes striaight away combined with a few taps on the leg and a few twitches ha.


I try to explain to the people that i meet, no one is perfect everyone has something different about them and i have Tourette syndrome that is now who i am and my personality, in actual fact 90 per cent of the people i tell that i have Tourettes are genuinely interested in finding out about the disorder and ask many questions about it. They then realise that it isn’t just the swearing you see in the movies and on tv.


Tourettes has never held me back in achieving anything i have strived for. My love of rugby league led me to playing in several junior representative teams and the players in my team never put me down about having tourettes because i am so open about it.


Living and working on a boat with 16 people in confined spaces would sound like a struggle, sometimes it is, though the whole boat knows and they tap me more than i tap them.


Living with tourettes is hard but be open to people about it and be prepared for people to have a laugh and stir you up about it. Just tell them no one’s perfect, that’s what i always do and i have the best support from friends family and work colleagues anyone could ask for because i have exepted it as who i am and if people don’t like that they and not worth knowing.


Thats my message to anyone who feels trapped and worried about what society thinks, be honest to yourself and don’t hide behind the disorder.


I hope this gives you some insight from the way i deal with the disorder. All the best. cheers, Corey

















Disclaimer | Printer friendly document