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Chemar

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Everything posted by Chemar

  1. Hi We have used them for general gut health, but not directly for tics. They seemed a bit irritating for the Crohn's Disease that my son also dealt with and so we stopped them as supplements and instead used enzyme righ food like papaya etc
  2. Hi there Welcome to the forum What type of magnesium supplement? Some forms eg magnesium citrate can have a laxative effect. Also what dose is he getting? Magnesium taurate is generally well tolerated, and we found Epsom Salts (magnesium sulfate) baths to be an excellent tic calmer (2 cups Epsom Salts in tub of warm water, soak 15-20 min) My son always ticced more on iron so we rather got his iron in via foods rather than supplements. Chelated zinc is also best from our experience. I have a link in my profile about me section on what we used over the years to help my son. Do also take a look at the main website for more info, as often finding what is actually triggering the tics is the biggest step to calming them! https://latitudes.org Here's the book se on finding what may trigger the tics https://latitudes.org/store/tourette-syndrome-triggers-book/ I am guessing the other book you refer to is https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/
  3. Welcome to the forum KSan As your daughter is now 8yo. you may be able to give her smaller doses of regular supplements that don't contain sugar, or other bad fillers? There are companies here in the USA that make sugar free pure supplements and many of those are also available from the companies' websites or on Amazon, iHerb.com and others A good way to increase magnesium is Epsom Salts(Magnesium Sulfate) baths - we use 2 cups in a tub of warm water with a 15-20 minute soak. Plain Kefir and high quality yoghurts are excellent natural probiotics. Sheila Rogers has another book you may find helpful as well now that you have her Natural Treatments for Tics and Tourette - it is "Stop Your Tics By Learning What Triggers Them" There is also a lot of very good information on the main website here: https://latitudes.org/ I hope this helps a bit. Please let us know how things are going.
  4. My son responded very quickly to the l-Carnitine for the vocal tic. He was already on other supplements to help with his tics and having regular Epsom baths etc so overall his tics were down, then the vocal began, and we added the l-Carnitine He was not taking guanfacine so I have no idea if that impacts the efficiency of the Carnitine. Have you tried to sleuth potential triggers for this tic?
  5. My son didn't react well to being given separate Niacin, but tolerates it in a multivitamin (He also reacts badly to B-complex but does still take some other B's separately eg Methy; B12 & P-5-P form of B6) Lecithin is beneficial, but be sure the source is ok (ie soy lecithin is what we used but some people are not soy tolerant) I hope your son is responding well to the l-Carnitine and gets relief from this vocal tic.
  6. We used 500mg l-Carnitine daily for 3 weeks. My son had a very intense shout/shriek tic and it worked very quickly to stabilize it, and it actually never returned. I am not saying this will work for your son but just sharing what helped mine when we were totally desperate over the shouting vocal tic. I would say if you try it again, do it first before adding any niacin or lecithin as otherwise you wont know which he is reacting too...good or bad. Do consider what Sheila asked re times of day and when the tic is at it's worst to see if you can correlate with any potential trigger at home setting him off, as opposed to when he is at school.
  7. Hi Vvny We never tried Guanfacine as my son had such bad reactions to all the meds we tried..... but I recall seeing a number of posts over the years about it...Try a search here of it's other names Intuniv, Tenex The only thing that helped my son's vocal tics was l-Carnitine, short term use. It was recommended by his physician and it really helped. Hope things stabilize for your son soon.
  8. I saw that Carlson Labs makes a B-6 Liquid (4 fl oz -120 ml) sells around $13 on most sites
  9. I know a number of folks with TS also struggle with OCD intrusive thought patterns, so am sharing this helpful video here as well:
  10. I shared this on the OCD forum as well, but as so many with PANS/PANDAS struggle with Intrusive Thoughts as well, I am posting it here too.
  11. A really well done and helpful video on dealing with those Thoughts !
  12. Yes, they fit all regular light & lamp fittings. Only difference is the light spectrum they emit.
  13. Daylight bulbs emit the light spectrum that being outside in daylight would :) Using them when on screens helped my son. It was physician recommended. We used them during the day and extra at night when he was on any kind of screen, including TV. You can get them at Home Depot
  14. Sorry to hear of the flare up. It is possible that increased screens could be contributing and yes, I know in my area the pollen is very high due to no rain in a long time. If he is stressed due to hearing about the pandemic, plus the change of routine being homeschooled, that could be a trigger too. The good thing is that he is home so not having to be extra stressed in social environments. I would just keep doing the things you know are helpful and try to remove as many triggers as possible, with understanding that screens may be hard to limit due to online school? We did find that using daylight lightbulbs were good as the screens in darkened rooms always seemed to trigger my son more Hope things stabilize for him soon. Be safe.
  15. Hi My son has TS and chlorine was a very major tic trigger for him. It's a relief your child didn't seem to have a reaction to this recent swim. Asking the camp to allow to shower at least directly after a swim in chlorinated water sounds like a very good idea!
  16. Bumping this old thread of mine up due to PM requests. Just updating too that my son is now in his early 30s and doing very well. He still maintains healthy diet and environmental habits, and takes only a few specific nutritional supplements that keep both the TS tic & Crohn's under control. He also avoids the things that he knows can trigger tics, and has found that as he maintains an anti-inflammatory diet for the Crohn's Disease, so that also proves very helpful for tics. He still knows without a shadow of doubt that a healthy immune system and avoidance of tic triggers as much as possible is key. His worst tics really were in his preteen to teen years and once he entered his 20s, although the TS remained, yet the tics were minor and much easier to keep subdued. Most of the people he encounters either at work or socially have no idea he has TS, unless he chooses to tell them.
  17. 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!)
  18. 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.
  19. 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?
  20. 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.
  21. 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?
  22. 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.
  23. 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
  24. 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
  25. 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.
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