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Everything posted by Chemar

  1. Welcome to the Forum LLYNCH though sorry to see what brings you here. I do want to encourage you not to lose hope! My son's TS tics were very severe when he was 10yo but we found, after going down a number of conventional medication rabbit holes, that there were ways to help him greatly through a more natural approach of nutritional and environmental remedies that reduced the things that were triggering his tics. Do take a look at our pinned threads as there is a lot of helpful info there, especially in the excellent resources of Sheila's 2 books on Natural Treatments and identifying
  2. Adding the invaluable Tic Trigger resource book here as well. Tourette Syndrome: Stop Your Tics by Learning What Triggers Them Guidance on identifying and managing triggers for tics and Tourette syndrome. Includes common triggers, family success stories, helpful resources, tracking logs, and more.
  3. There is also a lot of good info on this on the Irlen website https://irlen.com/who-we-help/
  4. Hi Mayzoo Sorry to hear you are struggling to get medical help with the abx. I am not sure which areas are covered by this thread from before that lists some doctors that members found helpful for PANDAS etc https://latitudes.org/forums/topic/5023-doctors-we-have-seen-who-helped-with-pandas/
  5. Hi greekdude Sorry you have not had a reply yet. I know more about Tourette Syndrome than PANDAS, so can't be of help other than to suggest you look at the pinned threads on this forum as there is a wealth of information there. Hopefully someone with PANDAS knowledge will be by soon to offer you some help
  6. Good that your doctor has agreed to check into this further! Not sure what tests they are running, but do note that if this is strep related = PANDAS then they need to run blood titres rather than just do throat swabs. The PANS forum has a number of pinned threads that explain this in more detail as well.
  7. That's so good that you are seeing that level of improvement :) I did just want to mention that anyone who may also have Tourette Syndrome should be a bit cautious of Tyrosine as, it aids in Dopamine synthesis, and Dopamine seems to markedly increase TS tics....
  8. Hi Barbs So sorry to hear of your daughter's condition. The dramatic changes you describe sound like perhaps they may be PANS/PANDAS related? Here is an overview https://latitudes.org/category/conditions/pandas-pans/ We also have a forum where you may find more helpful info: https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/
  9. Hello Kate424 I just wanted to welcome you to the forum, and hope you may get some replies soon from anyone in your area who may have recommendations
  10. Hi and welcome to the forums. I am hoping others who know more related to Celiac issues will be along soon. I do know we have many posts related to screens and tics, albeit not specifically breathing tics. As I need to head out to work, I will check back later and try to give some links to other relevant discussions and articles that you may find helpful
  11. Hi MLee It takes a very long time to load but it still loads up for me? It's an archived page. I just copied it so will paste it here for future reference too Again the link to the archived page is https://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html
  12. Hi 🙂 I get PMs from so many members who are desperately looking for guidance on this challenging journey to help their children. Apart from being able to share some of my personal experience, and to suggest searching the many helpful threads members have posted here over the years..... I cannot think of a better #1 resource than everything that is on the ACN/Latitudes homepage at https://latitudes.org/ I found the original Latitudes magazine many years ago as a desperate mom seeking answers to help my then 10 yo son, who was diagnosed with genetic Tourette Syndrome with very
  13. Updating here that I found an old archive of Bonnie Grimaldi's original treatment protocol for anyone interested: https://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html
  14. Gradual is best - ie short exposure each day and see reaction to each device. We found using daylight lamps essential, especially with TV and computer/video games that have any flashing. You can get daylight light bulbs at Home Depot etc to use in standard lamps, and there are also more expensive specialized lamps.
  15. 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
  16. 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
  17. 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 ano
  18. 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?
  19. 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.
  20. 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
  21. 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.
  22. I saw that Carlson Labs makes a B-6 Liquid (4 fl oz -120 ml) sells around $13 on most sites
  23. I know a number of folks with TS also struggle with OCD intrusive thought patterns, so am sharing this helpful video here as well:
  24. 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.
  25. A really well done and helpful video on dealing with those Thoughts !
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