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Chemar last won the day on May 29

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  1. Hello Raffi I am just checking back to see how things are going with your son now?
  2. 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
  3. 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
  4. 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
  5. 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.
  6. 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) a
  7. 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/
  8. 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.
  9. 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 a
  10. 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.
  11. 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.
  12. 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 di
  13. 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!)
  14. 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
  15. 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
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