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Everything posted by Chemar

  1. MLee I do want to try to encourage you not to worry, even though I so understand your concerns. I had to let go of so much stressful over protection for my son when he was still in those pre-teen extremely severe tics. Yes, there were times he would be exposed to a tic trigger and we had setbacks, but with continued diligence things always stabilized again. He soon learned for himself the consequences of things that triggered him, and became more careful of his own accord to take his supplements and avoid the triggers. The most liberating thing for him and for me was when he openly let his teachers and classmates know he had TS and what that involved, and they understood and accepted him even more, just the way he was! He still suppressed/masked a lot of his tics as he has always had ability to do that (helped by CBT) but he also knew he could release, and not feel stress to do so. Your son will only have his youth once....I would suggest to let him feel the liberation of just enjoying this camp. Your husband being there is an extra reassurance for you as well. I am honestly not dismissing your concerns...just speaking from our experience as to how often I allowed mine to get in the way of my son just being himself.....and more often than not, my worries were worthless and just caused us both stress (which in turn made his tics worse!)
  2. Mertol, I do think it's important to remember that, just as with anything that appears to fall into a Spectrum, symptoms and triggers etc vary greatly from individual to individual. People have so many variables in their immune systems and allergy/sensitivity scales that it really is not possible to make blanket statements eg that food isn't a factor, or that vaccines, antibiotics etc have no impact. In the 20+ years we have been on this journey with my son, with the clear genetic Tourette Syndrome link that runs in his dad's side of the family, coupled with whatever my side brings to his genetic mix, we have learned that you cannot put people with tics in a one size fits all box! I think it's very important to keep an open mind, and check as many things as possible, keep a journal and learn what helps and what hinders. That certainly was an outlook that provided tremendous help in our experience.
  3. I have also heard that perhaps as the hormones of the pre-teen - 20s years settle, it could play a part in stabilizing the dopamine sensitive aspect in the Basal Ganglia of folks with TS?
  4. 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.
  5. 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?
  6. 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.
  7. 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
  8. 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
  9. 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.
  10. 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.
  11. 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"?
  12. 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/
  13. Ashley, when you checked for strep was that titres or just a throat swab?
  14. 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
  15. 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?
  16. 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.
  17. 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 ♥
  18. 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!
  19. PS I also learned a lot from Peter Breggin's book "Your Drug May Be Your Problem" and other of his writings https://breggin.com/your-drug-may-be-your-problem/
  20. Hi LATT1 The withdrawal period, and severity, of coming off a medication depends on the type of med itself, along with the length of use. We were advised to titrate down very slowly, so from full dose to 3/4 , to 1/2, to 1/4.... then half that, quarter that till off. It was suggested to have at least a week between titrating down doses. We did this under physician guidance, with great care and it still took over 6 months till we felt my son was "back". During withdrawal we relied on acupuncture, resonance biofeedback, Chinese cupping and other natural detox remedies. It wasn't easy, but oh the relief when we had him off those horrid meds that were doing more harm than good!
  21. Sunflower, there is info re vaccines and tics on the Latitudes homepage, but it's primarily related to the thimerosal containing vaccines https://latitudes.org/vaccine-research-thimerosal-tics/ I hope things are a bit better there. Have you seen the neurologist yet? Hopefully they will be an open minded one, which sadly is the exception not the norm. But there are some really clued up excellent ones, so I hope that will be your experience! 🙂
  22. OK I have put these on your own thread for you, which should make it easier to follow, and for you to get more responses too.
  23. Neat = undiluted "Many drops" is way too much imo My son has never had a problem talking about his TS. We didn't realize that my husband, and his own father had it till my son was diagnosed. That was when the tics that ran in their family became understandable. They had been told they had "nervous habits" all their lives. Cristo-Krista, it's fine to keep discussing essential oils on this thread if you still have questions about those. That keeps this thread on topic.🙂 However, for any other questions, it would be best to ask on the thread now dedicated to your questions where I moved those other posts too as requested. Here's the link to it: https://latitudes.org/forums/topic/25718-tics-after-neck-injury-antibiotics/
  24. If he is reactive to probiotics, best just stay away from them or maybe try them in fermented foods if he likes that? It really sounds like perhaps the antibiotics have done a number on his system and left him hypersensitive. I would consult the physician who has been treating his neck injury regarding the NUCCA or Atlas Orthagonal as it depends on what was injured in his neck as to what treatment is most beneficial. I am wondering if perhaps you would mind if I split your posts off here onto a separate thread, so that we can keep this thread for Sunflower's questions ?
  25. Just do remember that Essential Oils are concentrated and not all brands can be applied to the skin without use of a carrier oil. When used neat, one drop is totally enough! and even then it depends on the individual. Some people cannot tolerate all oils. ie they will react ok with one and very negatively with another. My son has always been that way. Just because something is natural doesn't always mean it doesn't have a potential for reactivity. We learned that the hard way and with much trial and error. It's the same with supplements....they are excellent and beneficial - but different people have different reactions.
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