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Everything posted by Chemar

  1. 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!
  2. 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.
  3. 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.
  4. @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
  5. 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!
  6. 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
  7. 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.
  8. Hello Raffi I am just checking back to see how things are going with your son now?
  9. Raffi, although some people with Tourette Syndrome may also have PANDAS and those with PANDAS sometimes may also have Tourette Syndrome - BUT that is not the case for everyone. We had all the PANDAS testing done with one of the original PANDAS "experts" for my son, but he was negative, even though he had tics & OCD. We have a long family history of Tourette on his father's side back a few generations
  10. You arer welcome Raffi - sorry I can't be more helpful directly but my personal knowledge on PANDAS is very basic. I also wanted to give you this resource as there is a lot of helpful info at this website https://pandasnetwork.org
  11. Raffi I only have personal experience in natural treatments I used for my son, who was not dx PANDAS - so that is why I recommend you check (especially search and read previous posts on that forum) I know I saw talk there of using Olive Leaf Extract capsules as a natural alternative to antibiotics due to OLE broad antimicrobial properties. If IVIG or PEX were required, which for many PANDAS patients is important, then I think both conventional and natural practitioners can provide that
  12. Also to answer your question re natural therapies Yes! We had much success for my son who had a TS diagnosis. You might have seen the long thread I started many years ago about the methods we used. It is also linked on my profile page. Some parents on our PANDAS forum did report helpfulness of certain natural treatments, but generally PANDAS being directly related to infection, and the ramifications of the issues it causes, often requires some more conventional approaches. Again the PANDAS forum here has a lot of that information.
  13. Raffi I would suggest you read up on Pandas at the link I posted for you from our website: https://latitudes.org/category/conditions/pandas-pans/ To try to explain a complex issue very simply: Tourette Syndrome is primarily characterized by involuntary motor and vocal tics, often (but not always) with a genetic family history. It can have other conditions associated eg OCD, ADD etc Sometimes tics caused by environmental factors, or allergies or other issues are misdiagnosed as Tourette Syndrome PANDAS is specifically caused by strep infections (PANS refers to other infections) and it tends to flare up with subsequent infections and often with other illness. It is autoimmune & inflammatory and has a number of manifest symptoms that can include tics, OCD etc.
  14. Raffi yes, your posts are in English. From what you have said it really does sound like your son may be dealing with PANDAS? We have a specific forum for that, and although it is quieter there now, there is a wealth of information already posted there. https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/ Here is more info as well on ACN's main website https://latitudes.org/category/conditions/pandas-pans/
  15. Welcome to the forum Raffi. Please tell us a bit more and ask any questions you may have. I or others who follow here can try to give info from our experience.
  16. Hi vg1119 If you do a search on this forum for Zoloft you will find quite a few threads and posts that discuss it related to Pans/Pandas I know SSRIs seem to work well for some people, but our experience for my son (who was not dx Pandas but had Tourette tics and severe OCD so may have fallen into PANS category?) was not good - he was rx Luvox and it actually seemed to exacerbate the OCD and phobias while making his usually bright personality rather zombied. But as I mentioned, I have seen some parents very thankful for improvements, so do use the search to get that info - pro and con
  17. Hi ThreeAngels, I just wanted to welcome you to the forum. I am not clued up on PANDAS beyond the basics, so hopefully someone with more knowledge will be along soon. However what you describe of your strep history, would make me definitely look more into a possible PANS connection to your tics, anxiety etc. Hope you find answers and effective treatment.
  18. Hi Deanit Just 3 quick points ---- PANDAS/PANS can cause tics without "personality changes" and If there is a skeletal imbalance, that can cause the neck cracking tic - not just "diet or anxiety" - that is why I mentioned the chiropractic evaluation and possible NUCCA treatment. With the many things that can cause tics - the clearcut line in dx TS from other tics is a lot more blurred.
  19. Deanit, I don't think it beneficial to be "searching" for more tics? The old criteria for a dx of TS really are rather arbitrary, and with so many other reasons now known for why kids develop tics, it would be a lot more beneficial to focus on identifying potential tic triggers when a tic emerges, and implementing things that help alleviate. On your previous thread I mentioned a number of things that we found helpful when my son had a neck tic (NUCCA, epsom salts soaked warm cloth on neck or magnesium lotion applied etc) Not sure if you have tried any of those, but our experience did show help.
  20. This article by Andrea Frazier is from 2018, but this valuable parent perspective is still so very relevant! Your Kid Has Tourette’s? 5 Ways to Feel Less Overwhelmed (It Works!)
  21. So sorry your appointment was not more helpful Deanit. To be honest, most people who have passed through ACN Latitudes forums have had similar experience with Neurologists - sad but true - and another reason many switch to more holistic medical practitioners who can guide them with natural treatments for tics. If you are able to get any magnesium cream, oil or lotion (or Epsom) try rubbing that into your son's neck. Even a warm solution of Epsom Salts applied via a facecloth can often help. We found it most beneficial. Also do look into the NUCCA chiropractor - we avoided anyone who was not NUCCA certified as their methods are very gentle and different.
  22. Deanit - some people who have tics might cause their skeletal areas to go "out" - this happened a fair bit with my son, and was concentrated around the neck area. He would then have more jerking tics there to try to alleviate it. It sounds similar to the neck cracking you describe? We found tremendous benefit from having him treated by a NUCCA chiropractor - I don't know if you have them in your country http://www.nucca.org
  23. Hi Deanit Good to hear you were able to relax some without Internet and in Nature. I do want to reassure you, our situation is not an exception! In the 2 decades I have been around Latitudes/ACN, I have encountered far more situation where things improve than get worse, and many people whose tics resolve or who go on to have fruitful lives despite tics do just get on with life, rather than document their success/relief etc etc. I stay here as this site was so instrumental in helping me through the worst times all those years ago, and so to me it is paying forward. Please please don't lose hope, and rather seek ways to improve things rather than reading those "worse case scenarios" Have you read any of Sheila's books? There is a wealth of helpful info and resources in them, and they are also available on Amazon. I am not just trying to promote her books - they really have helped so many people and she has dedicated so much to keeping ACN/Latitudes going in order to provide that hope and help! Tourette Syndrome: Stop Your Tics by Learning What Triggers Them Natural Treatments for Tics & Tourette Syndrome
  24. Hi Deanit Just checking in to see how things are going with your son? I do hope you are all managing to have a truly happy vacation.
  25. Hi Deanit I do understand how you feel but your wife also has a point - you are not helping, and especially not helping your son, by obsessing over these tics. This may sound tough, but when my son first began manifesting tics and I was freaked out, one of my wise friends told me to consider visiting a hospital ward for terminally ill children to get things into perspective. I didn't - but it was the reality check I needed. Tics, Tourette etc are not terminal, as distressing as they may be. The more you focus on them, the harder you make it for your child! (as well as for your wife and yourself) Of course you want to help your child and yes, doing your online research is part of that. But the purpose is to gather helpful info - not find "worse case scenarios" Even if this were to be TS - why do you feel that is so severely distressing? People with TS frequently are highly talented and live very full lives, despite their tics....and many also seem to have tics diminish or stop completely as they pass the "hormonal" years. You are losing precious time to just appreciate your son for who he is, whether or not he tics. Focus on the things you can help with without obsessing over the things you can't control. The information here, and on the main website, on tic triggers and other things can really be helpful - but again, just do things with a balanced outlook and a step at a time. In the long run, that will help all of you most. Again - I DO understand your distress - but this advice comes from over 20 years of walking this journey with my son and I urge you to take a deep breath and focus on the wellbeing of your family as a whole.
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