s Dubai & Northern Emirates-Tourette's Syndrome
More
Hide

Tourette's Syndrome

328
Posts

Latest post on 2012/03/20 at 10:53:20
Hi,
Is anyone affected by Tourette's Syndrome? My DS has been diagnosed and I would really like to find other families out here that are going through the same thing as us. Perhaps we can be of support and strength to each other and our children could find some common ground together.
So far I haven't found any type of support group in Dubai but I am sure there must be other sufferers here as it affects 1 in 1000 children/adults.
This is a long shot but I really hope to find some support for my son.
Thank you
328
Posts

Latest post on 2012/03/20 at 11:12:22
Thank you Sandy Dogg, I have seen these but i don't think any of them have anything in Dubai, it seems to be Abu Dhabi and Al Ain. I really wanted to find some body in Dubai that we could easily meet for coffee etc. However, I really appreciate you finding this information for me
1358
Posts

Latest post on 2012/03/20 at 11:13:39
how about talking to your Dr, see if he has any other patients that he could pass your details on to....
328
Posts

Latest post on 2012/03/20 at 11:17:47
angelinaballerina wrote:
how about talking to your Dr, see if he has any other patients that he could pass your details on to....


...I tried that too, but the doctor doesn't want to pass on any information between patients due to confidentiality.
1993
Posts

Latest post on 2012/03/20 at 11:22:33
Doodles just keep bumping up your thread. Someone on here is bound to be able to assist you. Good luck.
7727
Posts

Latest post on 2012/03/20 at 12:01:48
Doodles wrote:
angelinaballerina wrote:
how about talking to your Dr, see if he has any other patients that he could pass your details on to....


...I tried that too, but the doctor doesn't want to pass on any information between patients due to confidentiality.


Would it not be possible to put up a notice saying what you said here, in your Doctor's waiting room, with his permission?
17
Posts

Latest post on 2012/03/20 at 12:17:49
I think DesertRose1958 (is that her nick?) knows something about this. She is in Oman but must have an idea.
328
Posts

Latest post on 2012/03/20 at 19:23:51
"bump"
1805
Posts

Latest post on 2012/03/20 at 19:44:37
Hi Doodles, my son has Tourette Syndrome, he was diagnosed not long after we arrived in Dubai.

How old is your son? and who did the diagnosis? I remember how distressing it was to go through because diagnosing Tourette syndrome is done by ruling out everything else. We had to go through an MRI and all sorts of tests first to make sure it wasn't a tumour etc and yes I will never forget the heart-wrenching moments of those days.

I would say the first year was the hardest and we also floundered because we felt quite alone in our journey.

I am really happy to help anyway I can. We are now over 3 years since the diagnosis and I feel DS is managing his tourettes extremely well, he is in secondary school now.
328
Posts

Latest post on 2012/03/20 at 19:55:15
Stardust wrote:
Hi Doodles, my son has Tourette Syndrome, he was diagnosed not long after we arrived in Dubai.

How old is your son? and who did the diagnosis? I remember how distressing it was to go through because diagnosing Tourette syndrome is done by ruling out everything else. We had to go through an MRI and all sorts of tests first to make sure it wasn't a tumour etc and yes I will never forget the heart-wrenching moments of those days.

I would say the first year was the hardest and we also floundered because we felt quite alone in our journey.

I am really happy to help anyway I can. We are now over 3 years since the diagnosis and I feel DS is managing his tourettes extremely well, he is in secondary school now.


Hi Stardust, thank you so much for replying! I am very sorry that your son is going through this but it is very re-assuring to hear that he is managing well. My DS is 7 and was diagnosed by the neurologist here in Dubai last year (too many details to discuss on here). I would love to talk to you more about it, would it be possible to e-mail you? Would you mind giving me your e-mail address or i can give you mine.
It is a lonely journey and not an easy one, especially for my DS. I want to jump into his little body and take it away from him.
Thank you again Stardust
1805
Posts

Latest post on 2012/03/20 at 19:58:51
Doodles wrote:
Stardust wrote:
Hi Doodles, my son has Tourette Syndrome, he was diagnosed not long after we arrived in Dubai.

How old is your son? and who did the diagnosis? I remember how distressing it was to go through because diagnosing Tourette syndrome is done by ruling out everything else. We had to go through an MRI and all sorts of tests first to make sure it wasn't a tumour etc and yes I will never forget the heart-wrenching moments of those days.

I would say the first year was the hardest and we also floundered because we felt quite alone in our journey.

I am really happy to help anyway I can. We are now over 3 years since the diagnosis and I feel DS is managing his tourettes extremely well, he is in secondary school now.


Hi Stardust, thank you so much for replying! I am very sorry that your son is going through this but it is very re-assuring to hear that he is managing well. My DS is 7 and was diagnosed by the neurologist here in Dubai last year (too many details to discuss on here). I would love to talk to you more about it, would it be possible to e-mail you? Would you mind giving me your e-mail address or i can give you mine.
It is a lonely journey and not an easy one, especially for my DS. I want to jump into his little body and take it away from him.
Thank you again Stardust



x
edited by Stardust on 20/03/2012
328
Posts

Latest post on 2012/03/20 at 20:04:23
Stardust wrote:
Doodles wrote:
Stardust wrote:
Hi Doodles, my son has Tourette Syndrome, he was diagnosed not long after we arrived in Dubai.

How old is your son? and who did the diagnosis? I remember how distressing it was to go through because diagnosing Tourette syndrome is done by ruling out everything else. We had to go through an MRI and all sorts of tests first to make sure it wasn't a tumour etc and yes I will never forget the heart-wrenching moments of those days.

I would say the first year was the hardest and we also floundered because we felt quite alone in our journey.

I am really happy to help anyway I can. We are now over 3 years since the diagnosis and I feel DS is managing his tourettes extremely well, he is in secondary school now.


Hi Stardust, thank you so much for replying! I am very sorry that your son is going through this but it is very re-assuring to hear that he is managing well. My DS is 7 and was diagnosed by the neurologist here in Dubai last year (too many details to discuss on here). I would love to talk to you more about it, would it be possible to e-mail you? Would you mind giving me your e-mail address or i can give you mine.
It is a lonely journey and not an easy one, especially for my DS. I want to jump into his little body and take it away from him.
Thank you again Stardust




x


Got it, you can take your address down now, will e-mail you tomorrow - thanks again
edited by Doodles on 20/03/2012
1805
Posts

Latest post on 2012/03/20 at 20:05:45
Doodles wrote:
Stardust wrote:
Doodles wrote:
Stardust wrote:
Hi Doodles, my son has Tourette Syndrome, he was diagnosed not long after we arrived in Dubai.

How old is your son? and who did the diagnosis? I remember how distressing it was to go through because diagnosing Tourette syndrome is done by ruling out everything else. We had to go through an MRI and all sorts of tests first to make sure it wasn't a tumour etc and yes I will never forget the heart-wrenching moments of those days.

I would say the first year was the hardest and we also floundered because we felt quite alone in our journey.

I am really happy to help anyway I can. We are now over 3 years since the diagnosis and I feel DS is managing his tourettes extremely well, he is in secondary school now.


Hi Stardust, thank you so much for replying! I am very sorry that your son is going through this but it is very re-assuring to hear that he is managing well. My DS is 7 and was diagnosed by the neurologist here in Dubai last year (too many details to discuss on here). I would love to talk to you more about it, would it be possible to e-mail you? Would you mind giving me your e-mail address or i can give you mine.
It is a lonely journey and not an easy one, especially for my DS. I want to jump into his little body and take it away from him.
Thank you again Stardust


x


Got it, you can take your address down now, will e-mail you tomorrow - thanks again


Thanks Doodles - but you will need to edit your post too to remove my email

edited by Stardust on 20/03/2012
328
Posts

Latest post on 2012/03/20 at 20:24:22
Stardust wrote:
Doodles wrote:
Stardust wrote:
Doodles wrote:
Stardust wrote:
Hi Doodles, my son has Tourette Syndrome, he was diagnosed not long after we arrived in Dubai.

How old is your son? and who did the diagnosis? I remember how distressing it was to go through because diagnosing Tourette syndrome is done by ruling out everything else. We had to go through an MRI and all sorts of tests first to make sure it wasn't a tumour etc and yes I will never forget the heart-wrenching moments of those days.

I would say the first year was the hardest and we also floundered because we felt quite alone in our journey.

I am really happy to help anyway I can. We are now over 3 years since the diagnosis and I feel DS is managing his tourettes extremely well, he is in secondary school now.


Hi Stardust, thank you so much for replying! I am very sorry that your son is going through this but it is very re-assuring to hear that he is managing well. My DS is 7 and was diagnosed by the neurologist here in Dubai last year (too many details to discuss on here). I would love to talk to you more about it, would it be possible to e-mail you? Would you mind giving me your e-mail address or i can give you mine.
It is a lonely journey and not an easy one, especially for my DS. I want to jump into his little body and take it away from him.
Thank you again Stardust



x


Got it, you can take your address down now, will e-mail you tomorrow - thanks again


Thanks Doodles - but you will need to edit your post too to remove my email

Done it but it's still showing on one of them??
edited by Doodles on 20/03/2012
1805
Posts

Latest post on 2012/03/20 at 20:40:29
Fixed
2494
Posts

Latest post on 2012/03/21 at 06:49:09
HI there,

my son has TS but its all mixed in with his profound autism with the result that its difficult for me to talk about TS as a seperate diagnosis. I can look at him and say if whats going on is TS or Autism but given how big his autism is I doubt very much the seperate diagnosis of TS makes much difference to him on a personal day to day basis. I suspect he feels his autism more and doesnt even know there's a few other things going on as well. I do know about TS but I dont really have day to day experience as the mum of a child with TS having to lead a typical life. I do however have a friend in the UK who has a child with TS and who in my mind is absolutely fab at being her sons mum. I could ask her if she'd contact you if you like?

Treatment wise my son uses Abilify to keep his symptoms at bay otherwise he'd ache from head to foot within a few hours of getting up in the morning. His twitchiness can be really extreme at time, as can his need to stop dead wherever he is and turn into a statue for a while. It seriously inhibits his ability to lead a life so we chose medication as a means to helping him. That said though, its only now that my sons friend is about 12 and approaching puberty that he's now on medication, the same one as my son.

I have a book called Natural Treatments for Tics and Tourettes by Shiela Rogers - if you would like to read it you're more than welcome to it. I'll be in Dubai next week and could pass it on to you then. Some of what was said in the book I just skimmed over, but there were plenty of things that made very good sense.
5
Posts

Latest post on 2012/03/21 at 09:10:20
Hi,

My son also has Tourette like twitches. He has not been formally diagnosed by a Dr, but is being followed by a naturopath.

DesertRose mentions the book "Natural treatment for tics" I also have this book and have learnt a huge amount both from it and from reading hundreds of articles and blogs on the internet.

My son's tics started when he was 6ish and it took years for me to put all the little twitches together and think they were all connected. He started with rolling his eyes, took him for an eyetest. Then clearing the throat, got his throat checked. Then one day the light went on for me and I put them all together and realised that all the little tics were part of something bigger.

My son tested intolerant to gluten, dairy and sugar, and a whole stack of other foods. It was pretty traumatic but we cut them from his diet, he started a regime of immune and bowel support and his tics have calmed considerably. He is now 13.

It is a very stressful on all the family, and I totally relate to just 'wanting to jump into his little body and take it all away' Doodles.

It would be great to see if we can all meet up, there seem to be a few of us here. Maybe we could form a support group.

We are 3 years down the road now and still have down times, talking to another mum who's child is going through the same would really help.
edited by aussiemango on 22/03/2012
328
Posts

Latest post on 2012/03/21 at 10:45:21
Hi aussiemango and desert rose - thank you so much for your replies. I'm so sad to hear your stories and have tears in my eyes, not just for what your sons are going through but also with an element of relief that I'm not on my own.

Yes I would love to meet up with you and talk about it, it would be great to start our own support group. Also to read the book on natural therapies as my son is now on medication and I can't say that I am entirely comfortable with it. aussiemango I have got your e-mail address now so you can take it down. I will e-mail you today. Desert Rose - can I have your e-mail address too?

Thank you all again so very much x
2494
Posts

Latest post on 2012/03/21 at 11:21:52
Doodles, you can get me on

Whereas I cant really talk TS from your perspecive given that our situations are so different, I can talk medicine so if there's anything worrying you then please feel free to ask. One thing that is I think is common with the children, though my son is almost 21 now, is that stress can aggrivate the situation as can irregular meals etc. I think TS is one of those condtions that benefits from what is considered a more old fashioned or traditional approach to mummying and childhood.

hth
edited by DesertRose1958 on 21/03/2012
5
Posts

Latest post on 2012/03/21 at 11:28:41
Doodles,

i'll leave my email a bit longer incase DesertRose or Stardust want to take it down.

And look forward to your email so we can have a chat and get together.

You are definitely not alone, and it interesting once you start to look around at people who just pass you by in the malls etc who have twitches. I think it is more common than we think, maybe misdiagnosed, or overlooked in the hope it will go away.

And so much is still not fully understood by doctors, it makes it hard for both the kids and parents to understand and decide on how to go forward with treatments and changes to life habits.

Talk to you soon. XX
5
Posts

Latest post on 2012/03/21 at 11:37:10
Hi DesertRose,

Definitely agree that stress increases the symptoms, but it is a hard one as so many stresses are just part of life.

I would be interested to know more about your ideas on traditional mummying, and why/how you think irregular meals affects TS.

My email is below if you would like to take it down, and potentially get together with Doodles.
328
Posts

Latest post on 2012/03/21 at 12:36:37
Hi ladies, I've sent an e-mail to you all today.

If there is anyone else out there please get in touch and join us, I already feel better just knowing that there people out there who know and understand what we, as a family, are going through. I hope that I can also offer some support to them too.

This is ExpatWoman at it's best. Thank you!!
2494
Posts

Latest post on 2012/03/21 at 12:43:08
Ausiemango , irregular meals can equate to blood sugar problems wich can lead to aggrivated symptoms during the day.

Re traditonal mummying/childhood - its hard to explain what I mean given that there is so much potential for mis-understanding what I mean but I really do believe that routine, a sense of our children knowing where they are in day and what they are doing next lack of surprise/sudden change- all contribute to security for the children which in return benefits them.

I know that could be autism I'm talking about but these things can all be fitted under the same umberella and as such can benefit from the same approaches - approaches that I use and I'm quite often told are old fashioned Big Grin

My friend and me both found we were parenting the children in very similair ways even though they are very different. She once said to me - god I'm turning into my mum.

I think I may have quite inadvertantly opened a can of worms
edited by DesertRose1958 on 21/03/2012
edited by DesertRose1958 on 21/03/2012
edited by DesertRose1958 on 21/03/2012
328
Posts

Latest post on 2012/03/21 at 13:06:51
DesertRose1958 wrote:
Ausiemango , irregular meals can equate to blood sugar problems wich can lead to aggrivated symptoms during the day.

Re traditonal mummying/childhood - its hard to explain what I mean given that there is so much potential for mis-understanding what I mean but I really do believe that routine, a sense of our children knowing where they are in day and what they are doing next lack of surprise/sudden change- all contribute to security for the children which in return benefits them.

I know that could be autism I'm talking about but these things can all be fitted under the same umberella and as such can benefit from the same approaches - approaches that I use and I'm quite often told are old fashioned Big Grin

My friend and me both found we were parenting the children in very similair ways even though they are very different. She once said to me - god I'm turning into my mum.

I think I may have quite inadvertantly opened a can of worms
edited by DesertRose1958 on 21/03/2012
edited by DesertRose1958 on 21/03/2012
edited by DesertRose1958 on 21/03/2012


I totally agree with you, My son struggles with a sudden change of routine and in fact he thrives on his routine! Not that we are 'Sergent Major' like with him but we definitely notice a difference if we stray from it without proper warning and time to adjust. His teacher commented the same too. Fortunately my DH and I are quite old school when it come's to parenting so it wasn't hard for us to be like this LOL!

I don't care if I'm old fashioned, my children are relatively well behaved and it works for us.
2494
Posts

Latest post on 2012/03/21 at 13:34:53
Doodles wrote:
DesertRose1958 wrote:
Ausiemango , irregular meals can equate to blood sugar problems wich can lead to aggrivated symptoms during the day.

Re traditonal mummying/childhood - its hard to explain what I mean given that there is so much potential for mis-understanding what I mean but I really do believe that routine, a sense of our children knowing where they are in day and what they are doing next lack of surprise/sudden change- all contribute to security for the children which in return benefits them.

I know that could be autism I'm talking about but these things can all be fitted under the same umberella and as such can benefit from the same approaches - approaches that I use and I'm quite often told are old fashioned Big Grin

My friend and me both found we were parenting the children in very similair ways even though they are very different. She once said to me - god I'm turning into my mum.

I think I may have quite inadvertantly opened a can of worms
edited by DesertRose1958 on 21/03/2012
edited by DesertRose1958 on 21/03/2012
edited by DesertRose1958 on 21/03/2012


I totally agree with you, My son struggles with a sudden change of routine and in fact he thrives on his routine! Not that we are 'Sergent Major' like with him but we definitely notice a difference if we stray from it without proper warning and time to adjust. His teacher commented the same too. Fortunately my DH and I are quite old school when it come's to parenting so it wasn't hard for us to be like this LOL!

I don't care if I'm old fashioned, my children are relatively well behaved and it works for us.



Phew Big Grin glad you knew what I meant.
5
Posts

Latest post on 2012/03/21 at 14:27:04
Desert Rose,

I do understand what you are saying regarding routines. My guy likes his bedtime routine, has to always do the same things in the same order or he can't settle.

I have emailed Doodles to see if we can get together sometime. Even through EW today it does my soul good to hear others words of advice.
328
Posts

Latest post on 2012/03/24 at 09:16:31
*Bump* - just in case there are more families with Tourette's that want to get in touch....
1805
Posts

Latest post on 2012/03/24 at 19:19:31
Hi Doodles, thank you for emailing, I will write soon I have just been so busy this week and weekend.
328
Posts

Latest post on 2012/04/23 at 09:13:22
*BUMP*

    Pages: 1





 

On ExpatWoman Today

Come to the Upcoming ExpatWoman Living in Dubai 2017 Event

Come to the Upcoming ExpatWoman Living in Dubai 2017 Event

WIN an AED 1,500 Beauty Treatment Voucher from Dr. Al Rustom

WIN an AED 1,500 Beauty Treatment Voucher from Dr. Al Rustom

Review: Treat Your Skin to CGF PRP Therapy in Dubai

Review: Treat Your Skin to CGF PRP Therapy in Dubai

Benefits that the UAE Government Offers to Electric Vehicle Buyer

Benefits That The UAE Government Offers To Electric Vehicle Buyer...

Will Insurance Cover Medication Errors in the UAE?

Will Insurance Cover Medication Errors In The UAE?...

5 Oral Healthcare Tips for Pregnant Mothers

5 Oral Healthcare Tips For Pregnant Mothers...

Valuing and Developing Children’s Creativity at Monroe’s Nursery

Valuing And Developing Children’S Creativity At Monroe’S Nursery...

Dr. Michael’s Dental Clinic in DHCC Welcomes New General Dentist

Dr. Michael’S Dental Clinic In DHCC Welcomes New General Dentist...

Offer: Vitamin D Check-up with Doctor

Offer: Vitamin D Check-up with Doctor's Consultation for AED199 O...

First Aid Kits: You Will Need These Items in Case of Emergency

First Aid Kits: You Will Need These Items In Case Of Emergency...

Spin King Ravichandran Ashwin Partners with Kings

Spin King Ravichandran Ashwin Partners With Kings' Schools...

What You Need to Know About Breast Augmentation

What You Need To Know About Breast Augmentation ...

All You Need to Know About Areola and Nipple Pigmentation

All You Need To Know About Areola And Nipple Pigmentation...

Are You Looking to Set up Your E-Commerce Business?

Are You Looking To Set Up Your E-Commerce Business?...

4 Things to Consider When Choosing a Reliable Removal Company

4 Things To Consider When Choosing A Reliable Removal Company...

Summer Safety Tips: How To Protect Your Children During Summer

Summer Safety Tips: How To Protect Your Children During Summer...

Injectable Aesthetic Treatments: What They Are & What To Know

Injectable Aesthetic Treatments: What They Are & What To Know ...

5 Pieces of Advice on How to Cope With Driving in Dubai

5 Pieces Of Advice On How To Cope With Driving In Dubai...

Infertile Coffee: The Effects of Coffee If You

Infertile Coffee: The Effects of Coffee If You're Trying to Conce...

How to Be Happy Around Kids If You’re Struggling to Conceive Your Own

How to Be Happy Around Kids If You’re Struggling to Conceive Your...

Consultant Periodontist Joins Dr. Michael’s Dental Clinic

Consultant Periodontist Joins Dr. Michael’S Dental Clinic...

Important Nutrients and Diet Tips for Healthy Male Fertility

Important Nutrients And Diet Tips For Healthy Male Fertility...

Review: Relaxing Candle Massage at Royal Retreat Spa

Review: Relaxing Candle Massage At Royal Retreat Spa...

Is Candy the Sole Cause of Tooth Decay?

Is Candy The Sole Cause Of Tooth Decay?...

Client Testimonial: Mauled Arm Saved From Amputation

Client Testimonial: Mauled Arm Saved From Amputation...

Polish National Opera to Perform at Dubai Opera Early Next Year

Polish National Opera To Perform At Dubai Opera Early Next Year...

Kärcher Pressure Washer: Putting Science to Work

Kärcher Pressure Washer: Putting Science To Work...

Car Maintenance Tips for a Long Summer Season in the UAE

Car Maintenance Tips For A Long Summer Season In The UAE...

How to Get Your Body Back After Baby Delivery

How To Get Your Body Back After Baby Delivery...

How to Prepare Your Child for Nursery School

How To Prepare Your Child For Nursery School...

7 Challenges When Relocating with Children

7 Challenges When Relocating With Children...

Top 4 First Aid Skills That You Need to Learn

Top 4 First Aid Skills That You Need To Learn...

Refresh Your Knowledge at Superior Minds!

Refresh Your Knowledge At Superior Minds!...

Get Rid of Your Stubborn Fat with Aqualyx Injection Treatment

Get Rid Of Your Stubborn Fat With Aqualyx Injection Treatment...

Why New Mothers Need to Know About Manzil

Why New Mothers Need to Know About Manzil's 'Mother & Baby' progr...

What You Need to Do When Spinal Deformities Strike Without Notice

What You Need To Do When Spinal Deformities Strike Without Notice...

Does Midnight Snacking Cause Loss of Teeth?

Does Midnight Snacking Cause Loss Of Teeth?...

What

What's the Difference Between a General Dentist and a Periodontis...

Should You Give Up Gluten Whilst Trying to Conceive?

Should You Give Up Gluten Whilst Trying To Conceive?...

Why is Osteoporosis Such a Problem and Can We Prevent It Developing?

Why is Osteoporosis Such a Problem and Can We Prevent It Developi...

Listen: A Mother

Listen: A Mother's Journey Through Infertility...

How Does Your Immune System Affect Your Fertility?

How Does Your Immune System Affect Your Fertility?...

Are You Dreaming of the Perfect Skin for Your Wedding Day?

Are You Dreaming Of The Perfect Skin For Your Wedding Day?...

Main Menu   Sites
DubaiDubai
Sign in to your account
Username:
Password:
Remember me?
Forgot Password? Join
Sign in to your account Close window Username: Password: 3 Users Currently Online