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Doodles
Posts 328



23/04/2012 09:13:22
*BUMP*


Stardust
Posts 1802



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


Doodles
Posts 328



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


aussiemango
Posts 5



21/03/2012 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.


DesertRose1958
Posts 2438



21/03/2012 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.


Doodles
Posts 328



21/03/2012 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.


DesertRose1958
Posts 2438



21/03/2012 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


Doodles
Posts 328



21/03/2012 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!!


aussiemango
Posts 5



21/03/2012 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.


aussiemango
Posts 5



21/03/2012 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


DesertRose1958
Posts 2438



21/03/2012 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


Doodles
Posts 328



21/03/2012 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


aussiemango
Posts 5



21/03/2012 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


DesertRose1958
Posts 2438



21/03/2012 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.


Stardust
Posts 1802



20/03/2012 20:40:29
Fixed


Doodles
Posts 328



20/03/2012 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


Stardust
Posts 1802



20/03/2012 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


Doodles
Posts 328



20/03/2012 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


Stardust
Posts 1802



20/03/2012 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


Doodles
Posts 328



20/03/2012 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


Stardust
Posts 1802



20/03/2012 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.


Doodles
Posts 328



20/03/2012 19:23:51
"bump"


UAE_BANDIT
Posts 17



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


simpleasabc
Posts 7619



20/03/2012 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?


Tru Blu
Posts 1847



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


Doodles
Posts 328



20/03/2012 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.


angelinaballerina
Posts 1358



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


Doodles
Posts 328



20/03/2012 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


Sanddy_Dogg
Posts 9161



20/03/2012 10:56:57

Doodles
Posts 328



20/03/2012 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


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