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Old 09-11-2013, 11:09 PM   #1
jrctherake
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Default new member here with Gilles tourette syndrome

Hello,

I go by rake. I'm 47 years old and have had TS since I can remember but was diagnosed later in life.

My mom says she remembers me jumping and jerking as a baby of 2 or 3 years old but back then people just didn't know much about TS so she and my doctor thought it was just a nervous twitch that would go away.

LOL........well, 40 some odd years later and not only am I still twitching (tics) my tic are worse now than when I was younger which is out of the norm.

Along with TS my doctor says I have depression and anxiety........well, duh. After being made fun of all my young life and even still today at times I think that alone will cause depression and for extreme anxiety.

I've tried Haldol, clonidine and several other meds to control my tics, depression and anxiety but nothing seems to control them enough to allow me to function as a normal person.

BTW, is there anyone else here that is on ssdi or ssi for their TS?

I've been on ssdi for several years for this but have never met not one person that has TS much less on ssdi for it.

Rake
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Old 09-14-2013, 05:54 PM   #2
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Hi rake, my son has TS, pure OCD, and anxiety. He is currently taking clonidine but I called the neuro Friday and want him off of that mess. I'm sorry your going through a hard time.
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Old 09-15-2013, 01:55 AM   #3
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Hi rake, my son has TS, pure OCD, and anxiety. He is currently taking clonidine but I called the neuro Friday and want him off of that mess. I'm sorry your going through a hard time.
Hi Hudsmom,

Thank you for your compassion. Most people have NO IDEA how TS can affect a person's life or ruin it if not treated with love, lots of therapy and even meds if it is severe enough.

I understand your concerns about the med clonidine or any med that is said to help with TS. I was taking it a few months ago (my third time to try it) but had to stop due to it making my blood pressure go to low.

The clonidine helps most people control their tics (LIKE ME) but some have problems with it long term (LIKE ME).

I have lived with severe Gilles TS for over 40 years. I'm no doctor by any means but I have been there and done that so to speak when it comes to treating TS.

There are not many meds that I have not been on to date.

Anytime you have a question and would like to hear opinions from someone that has taken a drug or tried certain type therapies just let me know and I will help in any way I can.

To a child TS can be especially cruel. A child has to deal with other children and as we all know children can be very cruel by nature to other children especially if a child stands out from the crowd such as your son does with TS. Even if his TS is mild children pick up on it like a red flag in a cotton field.

My childhood was the worst time in my life. Certain things that happened during that time that caused me mental issues for many, many years and because of it I still have problems dealing with them even now.

I'm so very sorry to hear he has TS. I hope it is a mild case and that he is one of the (lucky) many that (as they call it) "out grows it" by his late teens to early 20's. Most do and I hope he is one of them.

If you do not mind me asking:

1. how old is your son?
2. Was he born with TS? If not, how old at first symptom?
3. What was his first symptom?
4. What type TS does he have? Is it Gilles?
5. Does he have vocal tics? Does he curse during said tics?
6. Did he develop the OCD and anxiety after or at same time of TS?
7. If the OCD and Anxiety came after, which one came first OCD or Anxiety?
8. Besides the TS, which issue is worse on him, OCD or Anxiety?
9. Is his anxiety and OCD worse after he has physical or vocal tics or do they stay the same whether he has tics or not?
10. How long does his anxiety last on average when it flares up?
11. When he has anxiety how does it manifest itself normally? Does he become angry, have a hard time breathing, pace the floor, pull at his clothes or even want to take his clothes off?
12. It almost goes without saying but does he have any friends (non-relatives) that he is comfortable with while he is ticking? Very important!

A lot of doctors think that all TS sufferers automatically have OCD, anxiety, depression and a whole list of other things when in fact some people can have TS and have none of those if the TS is mild enough and caught early enough and given proper treatment.

Having said that most all TS sufferers with develop other issues such as general anxiety, social anxiety, OCD, depression and other behavioral issues if it is left untreated as a byproduct of what they go through in daily life. Especially in children simply for the reasons I stated earlier.

You can take an otherwise healthy child and put them in a situation where other children make fun of them at any cost and that child WILL develop some form of affective disorder if it goes on long enough.

Anyway, I'm sure you are well aware of all of this but it saddens my heart to know there are children suffering with this.

There is hope though as this day and time more and more people are seeing TS for what it is instead of a freak show the way they did when I was a child.

I only wish the ssa treated TS sufferers the same as they do a person with depression, bipolar or what ever.

It seems that no matter how severe TS is the ssa does not like to accept it as being a disability unless said person has several other issues as well.

Rake
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Old 09-15-2013, 07:43 PM   #4
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Hey rake,
1. how old is your son? He is 12
2. Was he born with TS? If not, how old at first symptom? around 3-4 yes old
3. What was his first symptom? Studder, picking lips, and needing to wear a coat at ALL times.
4. What type TS does he have? Is it Gilles? Gilles
5. Does he have vocal tics? Does he curse during said tics? He does have vocal tics but doesn't curse
6. Did he develop the OCD and anxiety after or at same time of TS? Both after
7. If the OCD and Anxiety came after, which one came first OCD or Anxiety? Anxiety
8. Besides the TS, which issue is worse on him, OCD or Anxiety? Anxiety
9. Is his anxiety and OCD worse after he has physical or vocal tics or do they stay the same whether he has tics or not? It gets worse w tics
10. How long does his anxiety last on average when it flares up? Depends on what the trigger was. Sometimes as little as 5 mins but usually 15 mins for the worst part to pass. However the remainder of the day is always ruff.
11. When he has anxiety how does it manifest itself normally? Does he become angry, have a hard time breathing, pace the floor, pull at his clothes or even want to take his clothes off? He has a hard time breathing, cry, he does pull at his clothes and wants a heavy coat to put on.
12. It almost goes without saying but does he have any friends (non-relatives) that he is comfortable with while he is ticking? Very important! His best friend has TS (shocker right) however he moved schools this year so he doesn't have one yet.

We didn't get a formal DX until a couple of months ago.

He has a lot of problems sleeping. His body cont to tics for a few hours after he had actually fallen asleep which takes him a while to fall asleep in the first place. Thanks for listening. Any advice would be more than welcome

Thanks
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Old 09-16-2013, 06:05 PM   #5
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Originally Posted by Hudsmom View Post
Hey rake,
1. how old is your son? He is 12
2. Was he born with TS? If not, how old at first symptom? around 3-4 yes old
3. What was his first symptom? Studder, picking lips, and needing to wear a coat at ALL times.
4. What type TS does he have? Is it Gilles? Gilles
5. Does he have vocal tics? Does he curse during said tics? He does have vocal tics but doesn't curse
6. Did he develop the OCD and anxiety after or at same time of TS? Both after
7. If the OCD and Anxiety came after, which one came first OCD or Anxiety? Anxiety
8. Besides the TS, which issue is worse on him, OCD or Anxiety? Anxiety
9. Is his anxiety and OCD worse after he has physical or vocal tics or do they stay the same whether he has tics or not? It gets worse w tics
10. How long does his anxiety last on average when it flares up? Depends on what the trigger was. Sometimes as little as 5 mins but usually 15 mins for the worst part to pass. However the remainder of the day is always ruff.
11. When he has anxiety how does it manifest itself normally? Does he become angry, have a hard time breathing, pace the floor, pull at his clothes or even want to take his clothes off? He has a hard time breathing, cry, he does pull at his clothes and wants a heavy coat to put on.
12. It almost goes without saying but does he have any friends (non-relatives) that he is comfortable with while he is ticking? Very important! His best friend has TS (shocker right) however he moved schools this year so he doesn't have one yet.

We didn't get a formal DX until a couple of months ago.

He has a lot of problems sleeping. His body cont to tics for a few hours after he had actually fallen asleep which takes him a while to fall asleep in the first place. Thanks for listening. Any advice would be more than welcome

Thanks
1. very common.

2. very common especially since he has Gilles TS. Children with TS but not Gilles TS are harder to diagnose at young ages (2-4) because the lack of vocal tics. Vocal tics usually start as a grunt.

A child that does not have Gilles form of TS is harder to catch at the ages of 2 or 3 simply because ALL children may jump/jerk/twitch a little from time to time due to any number of things so without the vocal it makes it very, very hard for ANY doctor to really diagnose and feel that they are 100% until the child is (on average) 8 to 10 years of age.


3. Studder is high on the first symptom list. Only until the mid 90's was studdering looked at as being a significant symptom of TS. Especially with very young children because lots and lots of children studder but may not have TS. Again, it is very hard for a doctor to really know 100% and for that reason they are very cautious about diagnosing TS until there are multiple symptoms that point to TS. Especially a MD and for that reason ALONE it is very, very important that a Mental health doctor and therapist be seen because they are much better with these type issues and for good reason.


I too wanted/had to wear a very large/heavy coat when I was a child when at school or out in public...or around ANYONE other than people I really trusted.

The coat made me feel more secure and I felt that my tics would not be as noticeable. Also, I'm sure while he is ticking you can hold him and his tics will get at least some better........sometimes they may get a little better just by him hearing your voice........well, the WEIGHT (you holding him) and COVER (same feeling he gets when you are comforting him) of the coat does the same thing just not as well as you can do. I'm sure you have already been told this by his doctors or therapist. If not, bring it up with them on next visit.

That coat has more power than you realize (unless you have already addressed this through therapy).

That coat is nothing more than a TS security blanket. I still remember mine. I still have it. My mother kept it.

Never throw that coat away. Even after he moves past the point he is now that coat can and will help him through some bad times as he gets into late teens. TRUST ME!

He can look at it and think back how he overcame that obstacle and may help him face another.

He will most likely not want wear it or any heavy coat except in cold weather as he gets a little older. Why? Well, now he really does not realize that the coat simply draws more attention to him but as he gets older he will see it more and more and will at ALL COST try to fit in with the crowd. And that will mean the coat or ANYTHING out of the ordinary will go.

4. A lot of people including some doctors think that every TS sufferer has Gilles TS. Again, Gilles TS is more rare than people think. Gilles TS usually hits harder and takes longer to out grow (if he is one of the lucky ones). Almost all people that TS stays with them have Gilles TS.

5. It's a good sign that he does not curse. People with TS that have that issue almost never outgrow it not to mention they are usually the ones that meds do not help. I Know because that is what I have. Your lucky in that way. At least you can have some comfort in knowing that.

6. It's good that the OCD and anxiety did not come until later. That most likely means his ocd and anxiety are SITUATIONAL.........meaning it is brought on from him having to deal with the TS in general when around others.

My anxiety, ocd, depression and TS came all at the same time. When that happens (opinions differ greatly on this) it usually means they will always have it. That does not mean some if not all of the byproducts of TS cannot be controlled just that they will always have to deal with it in some way.

7. Anxiety is the number symptom that comes with having TS. The more severe the TS the more severe his anxiety will become.

Keeping him in therapy is the best med for anxiety. Do not be afraid of giving him meds for anxiety as the TS and anxiety can and will feed off one another and cause him to have behavioral issues that will stay with him for life.

Some people overcome there TS by overcoming the anxiety in itself. I think that anxiety is a byproduct of TS and that ocd is a byproduct of anxiety. Again, treat the anxiety and the ocd will most likely improve.

8. That's very common and is what I expected to hear. Again, treat the anxiety and the ocd will improve as the anxiety does.

9. That is also common and also a good sign. People that have severe anxiety all the time have a much less chance of overcoming it. That tells me that it is his TS causing anxiety which leads to the ocd. Again, treat the anxiety and the ocd will most likely follow. The TS on the other hand will HAVE to run its course even if treated.

10. Again, very common with children with TS.

11. Most likely he will go from wanting to wear a coat or what ever to wanting to wear less. By wearing less his breathing will APPEAR easier and he will most likely realize this as he gets older.

I went from wanting to stay covered up (hidden) to not wanting to wear clothes at all as I got older.

12. Him having someone to relate to is SO VERY IMPORTANT. I cannot say that enough. It is key.

What ever you do.........DO NOT help is disease by allowing him to withdraw from others no matter what you have to do.

He will have to face this as an individual at some point.

You can help him by keeping him as active as you can. Physical active is probably the very best med for him at this point.

Try to find at least one hobby or sport that he likes and push him toward it at all cost. But, DO NOT be one of those parents that seem to push their children to be GOOD at it.........remember, it is for him to have an outlet to use energy as the less energy his body has the less his tics will torment him not to mention it will also decrease his anxiety which is a win/win.

Also, is seems that children from all walks of life can relate when they are on a team.......such as basketball, football, baseball or any other organized sport.

On the other hand those SAME children would most likely not have ever even spoke to each other if they were not introduced as teammates.

My mother pushed me into playing sports and other things and it proved to be a key role in me being able to make and keep friends that looked over my disability as a child.

If you have any other questions I am MORE than glad to help if I can.

Rake
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Old 09-17-2013, 06:27 AM   #6
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Hi
I do just want to comment here that one really cannot say that these parameters are so well defined for everyone who has TS....one consistent thing about TS is how it can vary from individual to individual!

My son is now in his mid twenties, having been diagnosed when 10yo though with symptoms from toddlerhood (inherited TS from his dad/grandad etc) .....and he was a very very severe case, so much so that we initially thought it may be PANDAS aka PANS
However, once we got him on the natural treatments, along with CBT, that I have documented in another thread here, his improvement was nothing short of miraculous. Over the years I have encountered many others with genetic TS who have seen the same dramatic improvements....

So to say that if the severe symptoms (including coprolalia aka cussing tics) are present when you are younger, they will likely always be there is just not really accurate.
True there is not yet a "cure" for TS per se...but there are ways to help reduce the intensity of the symptoms (the tics and the co-morbid symptoms of OCD, anxiety, sensory integration dysfunction etc etc etc) dramatically, without meds or invasive procedures....although yes, some people prefer the meds, or have had positive results from DBS etc

Also, there can be many other causes of tics that resemble TS.
More and more information is coming out on the role of infections (PANDAS aka PANS or PITANDs), allergies(food and environmental) toxins and others in triggering tic related symptoms that are not related to the genetic disorder known as Tourette Syndrome, even though they manifest similarly.
I have been amazed over the years at how many kids are misdiagnosed with TS, and once the actual cause of their tics etc is determined, and correctly treated, it becomes clear they do not have TS.
And even for those who do have TS, correcting nutritional deficiencies, removing allergens and cleaning up toxicity and other "triggers" results in much improvement.

Anyway, just adding all that to your discussion as my son is living proof of someone who has genetic TS, manifest very very severely, yet showed dramatic improvement via natural treatments, so much so that if one met him today, you likely would not even know he has TS.
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Old 09-17-2013, 12:10 PM   #7
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Originally Posted by Chemar View Post
Hi
I do just want to comment here that one really cannot say that these parameters are so well defined for everyone who has TS....one consistent thing about TS is how it can vary from individual to individual!

My son is now in his mid twenties, having been diagnosed when 10yo though with symptoms from toddlerhood (inherited TS from his dad/grandad etc) .....and he was a very very severe case, so much so that we initially thought it may be PANDAS aka PANS
However, once we got him on the natural treatments, along with CBT, that I have documented in another thread here, his improvement was nothing short of miraculous. Over the years I have encountered many others with genetic TS who have seen the same dramatic improvements....

So to say that if the severe symptoms (including coprolalia aka cussing tics) are present when you are younger, they will likely always be there is just not really accurate.
True there is not yet a "cure" for TS per se...but there are ways to help reduce the intensity of the symptoms (the tics and the co-morbid symptoms of OCD, anxiety, sensory integration dysfunction etc etc etc) dramatically, without meds or invasive procedures....although yes, some people prefer the meds, or have had positive results from DBS etc

Also, there can be many other causes of tics that resemble TS.
More and more information is coming out on the role of infections (PANDAS aka PANS or PITANDs), allergies(food and environmental) toxins and others in triggering tic related symptoms that are not related to the genetic disorder known as Tourette Syndrome, even though they manifest similarly.
I have been amazed over the years at how many kids are misdiagnosed with TS, and once the actual cause of their tics etc is determined, and correctly treated, it becomes clear they do not have TS.
And even for those who do have TS, correcting nutritional deficiencies, removing allergens and cleaning up toxicity and other "triggers" results in much improvement.

Anyway, just adding all that to your discussion as my son is living proof of someone who has genetic TS, manifest very very severely, yet showed dramatic improvement via natural treatments, so much so that if one met him today, you likely would not even know he has TS.
I agree with you on some of the things you say......hence the reason I said earlier that "children can jerk/twitch for a number of reasons".

You hit the nail on the head when you said "everyone is different". Not all can be treated the same way whether they are being treated naturally or with meds. No matter, no two people will require the very same dosage of the very same meds or the very same diet etc.... period.

If you read my suggestions to her you will only see only one place where meds are even mentioned and that is with anxiety and even then I say therapy is the best med.

Your mileage may vary and it sounds like it did and I'm so happy for you and your loved ones. It does my heart good to know that there are people out there that either beat "true severe TS" or find proof that they do no have TS at all and find a cure for what they do have. That is wonderful and I only hope it continues with many, many more people to keep them from suffering.

When it come to severe Gilles TS controlling anxiety is key in my experience and that of most all the many, many doctors I've seen. Control anxiety and all else (depression, ocd and yes even TS itself) may not go away but will almost always be much less intense.

I have tried everything you spoke of and much, much, more over the last 40+ years. None of the things you spoke of helped in the least with the exception of diet and even it's help is minimal but help is help so I will take it with a smile and be glad to get what relief it does bring.

I have a dietitian that I speak with ever so often. She is very good at what she does and has helped other TS sufferers as you have said but even she says that there are some like me where diet and other natural ways of treatment just are not enough to even make a dent. Then again, all of the many other things I have tried (lots of different meds) did/do not give much relief either. I am one of the unlucky ones that have no choice but to stay on very strong meds or I cannot function well enough to even type a message on here. Even then it usually takes me forever to get it done as I either run out of time or have to give up and wait till my tics die down.

Again, I'm so glad to hear of you and your loved ones success and hope more are able to follow in your footsteps. But, there are going to be some that will not have the same success with the route you speak of because we as you said yourself, are all different and what works for one or some will not work for another and to think that it will is ridiculous in itself.

Rake
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Old 09-17-2013, 12:27 PM   #8
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Hi Rake

you may want to re-read my post as I never even slightly suggested that my son's treatment would work for "all"...I even went so far as to mention how meds and even procedures like DBS are beneficial for some people.

My only reason for adding my comment was I felt it important to also mention that some people with severe genetic TS can and DO in fact get MUCH better with whatever treatment option they pursue, and that my son was one of them.
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Old 09-17-2013, 02:22 PM   #9
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Hi Rake

you may want to re-read my post as I never even slightly suggested that my son's treatment would work for "all"...I even went so far as to mention how meds and even procedures like DBS are beneficial for some people.

My only reason for adding my comment was I felt it important to also mention that some people with severe genetic TS can and DO in fact get MUCH better with whatever treatment option they pursue, and that my son was one of them.
I did not misunderstand your post. I may not have worded my response correctly. Sorry if you took offense as that was not my intensions.

I don't know about you but I am no doctor but unlike most all doctors what I know about severe Gilles TS was not learned from reading a book or taking lectures. What I know about it is from living with it for over 40 years and to me that trumps anything read in a book by someone that has never experienced it. That's just my opinion. I'm not saying doctors do not know what they are doing but I am saying "some" doctor don't.

Most every doctor I have seen are all alike. The first thing they want to do is throw me on a handful of pills that may indeed help with TS and some of its symptoms but at the same time cause me awful side effects that are just as bad if not "worse" than the TS itself. It's a find line either way.

As I said before I understand and know that some can and will overcome this disease and I am very happy for you and your son, especially your son as severe TS can ruin a persons life it the proper steps are not taken. Sometimes no matter the treatment a person's life is greatly altered to the point they cannot function in daily life.

Even someone like myself that does not respond to most any treatment gets some relief by knowing what to do and when to do it such as treatments...i.e. meds, therapy and yes your route as well. But, people like myself feel like freaks for lots of reasons. One reason being because so many TS clients can be cured if you will or at least get to the point where the symptoms are controlled enough to where they can at least drive a car, use a knife in the kitchen, carry on a conversation without cursing and so many other things that I'm sure you are aware of.

When a person has a severe disease of any kind it is crazy to not try any and all methods of treatment before throwing in the towel and starting strong and dangerous meds for life.

Again, that is why I kept telling her that therapy and keeping him active by not letting him withdraw from others his own age is key with dealing with the anxiety at this point in his life otherwise he may end up being like me and that is something no child deserves. My prayers go out to him and his mother and I hope she finds relief for him no matter what form that relief comes in.

I did not come straight out and say it but when I said to her that therapy and keeping him active was key that was my way of saying that meds should not be the first line of defense.

Anyone that has any kind of disease will have to face it as an individual at some point and it is much wiser to MAKE a child face it at a young age vs. letting him become withdrawn and doing even more damage than the TS itself in the long run.

I cannot say it enough, I'm so glad to hear of your son's recovery. I really, really wish that everyone could have the same success as he has experienced.

I think you said his dad and grandfather has or had TS. If I'm correct then I do not have to tell you just how devastating TS can be for a child or an adult.

You say that they (whom ever they are) are coming up with new ways to treat TS. Well, in my opinion TS has been and still is on the back burner like some other diseases.

I doubt that TS will ever get the attention it deserves. Also, in my opinion the reason TS will not ever get the attention (research) it deserves is because there is not enough money in it for the pharm companies to be made. They make their money with drugs that affect lager percentages of the general population and TS does not rank high enough and I fear that it never will.

One other thing that worries me is that almost all foundations/organizations for cancer etc.....are not government run even though they get government funds (in large amounts) and funds from pharm companies (in even larger amount) where TS is given far less for the obvious reasons $$$$$$.

Another thing is he ssa and TS. The ssa does not even see TS as a reason to be disabled. If a person that has TS files a claim they will NEVER get approved unless they have not one but several other issues to accompany the TS such as depression, anxiety and the list goes on. But, there are people on disability for depression alone or anxiety alone and that does not make sense to me.

It should not matter what disease a person has. What should matter is how severe that particular disease is and how it affects them whether that disease be TS, depression, bipolar or what ever. It should be a level playing field but it is not.

Anyways, if I get going I sometimes forget and will ramble on and on so I will end it here as I think most already know what I'm saying anyway.

Rake
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Old 11-10-2013, 02:36 PM   #10
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Welcome to the forums, rake. I've not been reading here for ages so haven't caught up with all the messages before now.

I just wondered why you differentiate TS from "Gilles". Gilles was M. Tourette's first name. TS is Gilles de la Tourette Syndrome (sometimes called GTS). I'm thinking perhaps you mean Tic Disorder when you were talking about the difference between TS and Gilles TS?

I'm in a different country, so can't help with the ssdi or ssi question I'm sorry.

Hudsmom, if you're still reading here...
My son took Clonidine for a very short time when he was young. He had a lot of side effects. I hope your son is doing better now.
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