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

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

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.

I have not been able to tell my family about my TS (except my husband and sister) because it is so anxiety provoking for me. I am glad to have found others who have gone through the same process I am currently going through. Trying to get an official diagnosis and start the long road ahead to get my anxiety under control.