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Chemar

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Chemar last won the day on September 23 2019

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  1. Hi SuzyQ It does seem BonTech is no longer in business I keep a post (actually thread lol) on my profile page about me section for anyone wanting to look at the protocol we used to help my son. He is in his 30s now and doing just fine. Still keeps up with some of the supplements that he has always found most useful but doesn't take nearly as many as he used to have to! He also maintains as clean a diet and environment as possible, and avoiding the things he knows trigger him.
  2. I was just reading through your post and noted this Michele...just wanted to mention that RAGE is not really so common in Tourette Syndrome. Yes, some kids deal with it for various reasons, either co-morbid (Often an ODD parameter) or sometimes even a result of built up frustration that their tics etc are so misunderstood. But many kids with TS are actually very gentle, sensitive and calm personalities, who just happen to have tics. Not all have co-morbid conditions either. Have you ever had your daughter checked for possible PANS/PANDAS? Just some of what you describe makes me wonder?
  3. Hi again Michele, I seem to have missed this post when you made it. Sorry! Yes our physician was experienced with TS and was an Integrative Physician. (Fully qualified MD and also NeuroPsych specialist but also trained in more complementary/natural medicine) My son is now in his 30s and doing well. His TS/OCD was at it's worst in his preteen-early teen years.
  4. Hi MIchele Some kids with TS have what are known as Tourettic OCD. Tics morph into OCD and vice versa! There's quite a bit of literature about it. We found CBT (cognitive behavioral therapy) very helpful along with supplements careful diet, environment and all else we could do to eliminate known tic triggers. My son also found acupuncture therapy very helpful. The therapist we used was experienced with TS
  5. We never used a B6 in liquid form so hopefully others may know However, our physician recommended using the P-5-P form of B6 for a number of reasons
  6. Hi again No L-Carnitine and NAC (N-acetyl-cysteine) are 2 different supplements We used the L-Carnitine. Our physician was very experienced with Tourette Syndrome, and was an Integrative MD My son is now a thirty something adult, doing very well. His TS was at its worst in his preteen years, which is when he had that yelling tic very severely.
  7. Hi LianaE As this thread is from 2013 I am not sure if Cara still follows it? I can comment from personal experience that the supplement L-Carnitine greatly helped my son when he had what we called the "shrieking tic" (very loud frequent yelling). Our physician recommended 500mg daily and the effect was remarkable. It's not supposed to be used longterm, and we were advised to discontinue after 3 months, but didn't even need to use it that long! We continued about 3 weeks past the cessation of the shrieking tic, The physician did say we could restart it if the tic returned but thankfully that particular one never did.
  8. Hi I had never heard of Bowen Therapy for tics, so I looked online for it. Seems from the articles that came up that it is specifically designed for "nervous tics" or "tics caused by anxiety"?
  9. I just wanted to post a reminder, and also for those who may not know, of the excellent articles and helpful info etc on the ACN Latitudes website. There really is a wealth of information there, and one can also add interactive comments to some of the articles. https://latitudes.org/
  10. Ashley, when you checked for strep was that titres or just a throat swab?
  11. Our admin, Sheila Rogers, has published an in depth article that is really worth reading! How sad that conventional medical views refuse to think beyond the same old approaches, despite the growing evidence (research & anecdotal) that there are other aspects to consider causally and for effective treatment. Bravo Sheila for calling out this ongoing "failure and farce"! Here is the link to Sheila's article "2019 Guidelines For Tourettes and Tics: A Failure and A Farce" : https://latitudes.org/2019-guidelines-for-tourettes-and-tics-a-failure-and-a-farce
  12. Hi akeaeler83 Have you also looked into eliminating other triggers apart from diet ie environmental? Have you had food allergy testing done, hence the eliminations?
  13. Hi MLee My son's tics began to diminish in frequency and intensity once we had started implementing the natural treatments and eliminating as many triggers as possible. This has continued as he has aged, but he still remains vigilant for his known triggers as they can set his tics off again, even now, even though waxing tics are much subdued compared with his younger years.
  14. Yes, the coprolalia did ease off with a combination of CBT and the other remedies/treatments we were using. Something has likely triggered these tics, and yes, it will take a lot of "detective work" on your part to determine why....but it is so very worth it. Our experience with mainstream doctors was they just give medications to stop the symptoms rather than trying to heal the underlying causes. An integrative doctor is often the best choice as they are fully qualified MDs who also have studied more alternative/holistic/natural methods of treatment. I really encourage you to take heart and not be afraid as your attitude toward all this can have an effect on your son. You need to be his safe place where he can find calm reassurance. I know that is very very hard, as we parents want to immediately fix anything "wrong" for our child. But please know things can and will get better ♥
  15. Hi I do understand how you are feeling as my son went through a bout of coprolalia (cussing/swearing) tics when he was 10 and it was hard for him as well as for us (he does have a Tourette diagnosis, genetic from his Dad's side) Coprolalia is recognized as a vocal tic in Tourette Syndrome. All TS tics are involuntary, so that makes the struggle when dealing with "socially unacceptable" tics even harder, especially as often having people notice or comment makes the tic even harder to suppress. My son had Cognitive Behavioral Therapy, and that really helped as he was able to learn ways to substitute words or say the bad ones under his breath. A good CBT therapist can really help tremendously...but it was our experience that it's best to have someone who understand TS He is 30 now and living a productive life so please know there is hope, even after the multitude of assorted tics that have waxed and waned over the years. Things were at their worst for him when neurologists and psychiatrist put him on those very strong prescription drugs, so just do be informed before you accept prescriptions from the doctors etc you are planning to see. I know not everyone reacts negatively to the meds, but when they do, it can be long lasting and very seriously detrimental. We found tremendous help by addressing his diet, environment, allergies etc and supplementing with nutrients he needed. We also used a number of other alternative treatments that made a very positive impact. I have an old thread that gives some info on what we did to help him https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/ I would also encourage you to look at the section on the ACN/Latitudes website on TS tics https://latitudes.org/conditions/what-is-tourette-syndrome/ Also the very helpful resource books by Sheila Rogers on natural treatments for tics/Tourette and learning what triggers tics https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/ https://latitudes.org/store/tourette-syndrome-triggers-book/ I hope this helps a bit, and that you will be encouraged in knowing things can get better and there is much reason for hope!
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