Quote:
Originally Posted by Chemar
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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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