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Everything posted by Chemar

  1. @MLee yes, we had many tests, including bloodwork. We saw Integrative Physicians.Yes, the rapid improvements in my son after we began corrective nutritional and other specifically recommended supplements was remarkable, especially as he had actually been in a negative decline after we started the Rx drugs the Neurologist had prescribed. It was through ACN (then a magazine) that I learned about the alternative ways to approach tics & TS and I will forever be thankful for Sheila's dedication in providing this info. If you look at just the first post in my looong thread started in 2004, you can see more detail of what we did. https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/
  2. Hi MLee My son's first tic at 4yo, before we knew he had TS, was eye rolling and blinking. We had a specialized eye test and he did needed corrective lenses, and those did help a LOT, though not a "cure" per se Later when more tics developed, the eye tics were a bit different, and only really settled once we started the needed nutritional supplements and removal of tic triggering dietary, environmental etc factors Flashing light always has triggered him, so daylight lamps while watching TV or playing video games helped. Interesting @Conanjaguar re you also noticing focus - as it was always evident that being focused intently on something seemed to bring about an overall calm in tics for my son - something we noticed even more when he played guitar/sang
  3. Hi @FraggleRed Just an FYI that we did NOT use acetyl-L-carnitine We were advised to use just L-carnitine I believe there is a difference.
  4. Hello @TheMainMan We used L-carnitine short term when my son had a shouting/yelling tic. Our Integrative physician recommended it. I don't know the exact biochemistry behind it - but I can confirm it immediately helped my son with that loud vocal tic. Once that tic had calmed, my son stopped using it, again on the advice of our physician, who said it was best used "as needed short term" I am only aware of it helping with vocal tics- so can't comment on any general use.
  5. Conanjaguar - are your referring to mold or mildew? Mold is dangerous to health in general, and usually something that needs specialized cleaning, especially as the spores can be hazardous. Especially black mold needs professional treatment. Mildew is what is most commonly found. There are cleaners for that, usually include chlorine bleach, which has been found to be triggering for tics in some people. We have successfully used hydrogen peroxide to clean the mildew that tries to grow in moist areas like bathrooms etc. White vinegar also eradicates mildew. Neither of those cleaners seemed to be triggering for my son
  6. The Dopamine connection in TS tics has been known for a long time - I am heading out so not time to post more now - but if you do an internet search for dopamine and Tourette tics, you will find many research reports, articles etc Dopamine levels increase during puberty.
  7. Hi again @Conanjaguar Different people seem to have varied dietary reactions that depend very much on their individual specific allergies and sensitivities to things like gluten, sugars, dairy etc. But one thing seems relatively consistent and that is to avoid all artificial food additives like food coloring dyes, flavoring and other processed food chemicals. pesticides etc and high mercury fish like tuna We found a balanced organic diet to be key. But again, some people have very specific sensitivities that need to be factored in, where even "good" food may not be so for them. Keeping a food journal is helpful.
  8. Welcome to the forum @Conanjaguar I agree that our experience with my son was that his tics were at their worst in the period just pre and during puberty. General consensus also seems to agree with this, and it seems it may be related to increased dopamine
  9. Hi @MLee My son does well now and his tics are so minimal that hardly anyone would notice them. Even when they are triggered now - they are nowhere near what he once had in his preteen years! His tics started to improve as soon as he stopped the pharma rx meds, started specific supplements/nutrients, avoided things that triggered his tics. As he passed the teenage pubertal years, there was a continued improvement in the overall tics. He has a good job, works hard, nice apartment. Well adjusted, and, having dealt with TS since childhood, he is a more compassionate and empathic person toward others. He feels TS gave him a lot of insights he may not have otherwise had. Number one tic trigger still seems to be stress - which is often harder to control in this stressful world - and so he continues to create and play music to relax, plus he has a set up that allows him to unwind with video games that is not triggering for him. He has maintained a healthy organic diet, and avoids any food additives that have always triggered his tics (artificial colors, flavors, chemical fillers, MSG etc etc) He also still avoids other environmental things that he has long known were triggers for his tics (eg chlorine pools, flashing lights, artificial fragrances/perfume etc). He continues to take certain supplements that work well for him. Experience has shown him that these are important to his overall health and well being, as well as to keeping TS symptoms minimal. Hope that answers your question :)
  10. Thankful with you, as I sure know the feeling when you see relief for your child !
  11. Hi Nate It is astonishing sometimes what triggers tics - points again to how individual reactions to various factors, and even treatments, can sometimes be. Was your daughter reactive to organic produce? We discovered that my son's later diagnosed Multiple Chemical Sensitivity (MCS) factored in to some of his reactivity/tic triggers.
  12. Hi MLee I agree that Cognitive Behavioural Therapy was very beneficial for my son in many respects, especially with vocal substitutes etc But some of the "mouth tics" can also be involuntary motor tics - which is a little harder to apply those principles of CBT to I think?
  13. Welcome to the forum Linda. My son used a mouth guard for a short while when he had some teeth grinding/snapping tics - but it was more to protect his teeth than to control the tics. Thankfully that form of tic didn't last long. There are some discussions on this forum from parents who have had success treating TMJ with specialized mouthpieces- and found it relieved some tics - but I don't know if that would be relevant to what you are asking about?
  14. Hi Jacke My son had to have some vaccines for a trip abroad when he was younger - but although I was concerned - his tics did not seem to be altered after the vaxx. However I know some parents have found any vaxx to be triggering, and I wonder if that may be due to the actual immune response rather than the vaxx per se. I say that as some people with tics (my son & dh included) seem to tic more when they are ill, and our physician once suggested the immune system ramping up could be the trigger? Just a thought to add to this discussion.
  15. I really don't want to engage in disagreements, as that just isn't why I am here. Nor am I now, or have I ever, tried to suggest magnesium is beneficial to everyone who tics. But when my son was suffering from severe tics many years ago, after horrible effects from the medications prescribed, I found Bonnie Grimaldi's hypothesis on magnesium and other nutrients helping to reduce (not "cure") TS tics. Her initial writings formed the basis for other research. It was life changing for my son! For me, the only result I needed was to see for myself just how beneficial it was for my son. And as I have stated many times, we always worked under supervision of a trusted health professional, and I used my own training to be diligent in checking things out carefully. I'll repeat too what I have said since the start of our TS journey - there are many different reasons that people tic, and many different ways that may help them to tic less. I had only mentioned the Tic Triggers book in hope it may be helpful. So I will just leave this discussion to avoid detracting from the benefits others may find, and wish you only good progress as you seek to help your child as well.
  16. Tics changing form are part of waxing and waning. I totally disagree with your assessment of anecdotal evidence as someone who spent many years in medical research. I have seen first hand how scientific research is skewed - whereas anecdotal evidence often leads to more valid scientific research.There is however scientific research that shows the effectiveness of magnesium supplementation for Tourette Syndrome. However, one of the important things always is that there are multi-faceted approaches to healthcare, and not everyone will always agree. The essential thing is that people are able to find help and healing.
  17. Hello Mert, I am not familiar with the term "elasticity" for tics - but am assuming you are referring to what is known as "waxing & waning" If so, there are numerous parameters that can impact the increases and decreases in tics. Have you read Sheila's book on tic triggers? Although not "scientific research" per se --the information comes from much anecdotal evidence, a lot of it over the years on this forum. https://latitudes.org/store/tourette-syndrome-triggers-book/
  18. I've noticed a recent increase in media coverage of Tourette Syndrome - likely in no small part due to Billie Eilish being so candid about life with TS - especially in her recent interview with David Letterman on Netflix. A lot more people are talking TS - which will hopefully foster more understanding. Today I saw this BBC article on a young lady in Wales who decided to write about her life with TS https://www.bbc.com/news/uk-wales-61237894 One thing that really bothered me tho is that there is still such a closed aspect to TS treatment.. It's almost a quarter century since my son was first diagnosed TS - and still so little real progress in the recognition of the multi-faceted approaches that can be helpful beyond just "medications and behavioral therapy". Hopefully change may be in the air tho..........
  19. Hi Katreya Again a quick post from work for me - but yes, my son had heavy metal toxicity (blood test confirmed) - his was mercury, believed possibly leeched during the pregnancy from my many tooth fillings? He had specialized treatment and detox that made a big difference, but was not a "cure" per se as for him, the situation was more multi-faceted. There is quite a lot of info here on the forums as well as Latitudes main section on heavy metal toxicity impacting neurology. You must be so relieved to see these improvements!
  20. Hi Katreya I'm at work so just a quick post - The only treatment that really helped my son years ago when he had coprolalia was Cognitive Behavioural Therapy CBT) with a therapist who understood the involuntary nature and other aspects of TS tics. In fact, CBT helped with much he was going through at that time! (We did not deal with copropraxia) re Screens - although my son ticced more back then when he was on a screen with lots of flashing (over 20 years ago) - the modern day screens are so much better that I can understand the iPad being ok for your son and likely others too. We found keeping a daylight bulb lamp on while my son played games or watched a screen also helped - and honestly his relaxation playing a game after keeping tics in through the school day was greater than the tics it may have triggered. Hope you get more replies and find info you need to help.
  21. Welcome Lulul4834, and thanks for sharing your encouraging update on what has helped your child. So many of us can agree that addressing things like Candida and other GIT issues can have a positive impact on tics (and other health issues) - we learned early on that the "Gut-Brain Connection" was a real one! And Magnesium was key in helping my son's tics as well. We hope things continue to stay well for your child.
  22. @Madimi my son is in his 30s now and started eye rolling tics at 4yo with full blown TS by 10yo. There is a family history of tics & TS . I have a looooong thread that I started in 2004 about our journey with TS. I linked it for you Keeping that "tic journal" really helps to spot tic triggers you may not have realized! Many throat infections would make me consult a PANDAS specialist and have those blood titres done as that really is the only way to know if there is a possible PANDAS component to the tics. There is a lot more info here on our PANS/PANDAS forum. Your son may not have a Pandas link - but always worth checking in case when there is a possible infection connection. Here is the link to my old thread which may be helpful
  23. Hi @madimi Yes it's very possible that you had childhood transient tics with the eye rolling. I think it's hard with the TS label as yes, it can run in families, but TS symptoms also might not have clear genetic links in some, and as we know, sometimes even transient tics or tics caused by other things (eg PANS/PANDAS infections, allergies, environmental triggers, food intolerance etc etc) We found keeping that "tic trigger" journal so beneficial - and trying not to obsess over tics, but just letting my son be the one to mention them if he chose to. We discovered the hard way that the more attention you draw to the tics - the harder for the person and the more they tic! Anyway, I do hope you are taking care of yourself, and (hard as I know it can be) not worrying but rather just learn what makes the tics worse by keeping that journal - it really helps all round as eliminating potential tic triggers where possible makes things so much improved!
  24. Hello @madimi I see you have also been in discussion with some other parents here and am so thankful you have some support and are able to express the things that are troubling you. Please try not to be scared - I know that is hard but honestly, for most, things do get better as children grow older - whether because the tics reduce, or because the person with tics learns how better to live with them. Many of us who have been here a long time can attest to how, even with Tourette Syndrome, our children have grown into productive adults. Sometimes the challenges in childhood can help to make them more caring and compassionate, as well as more determined not to let tics control who they are. Our family was greatly helped by many of the natural approaches discussed here at ACN/Latitudes, so I do encourage you to also look at the main section for some very helpful info www.latitudes.org
  25. That's a good point Nate as many have reported fragrances trigger tics, and so many products have artificial perfume these days (including some febreeze, and other so called air fresheners) In our family, 2 of us are highly sensitive to artificial perfumes but tolerate essential oils (from plants) very well, in fact beneficially.
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