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Chemar

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Everything posted by Chemar

  1. 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.
  2. There is also a lot of good info on this on the Irlen website https://irlen.com/who-we-help/
  3. 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/
  4. 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
  5. 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.
  6. 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....
  7. 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/
  8. 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
  9. 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
  10. 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
  11. 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 severe tics & OCD, and was negatively reactive to medications. It was a turning point in our lives, and I will forever be so thankful to Sheila Rogers De Mare for providing a portal to research alternative ways of treating tics & TS, and learning about the many factors involved in why children may tic, that go beyond just "genetic" TS. Fast forward all these years and my 30yo son is doing so well, with a full life and good job, while also using his artistic talents as a singer/songwriter, and enjoying a thriving social circle (outside of the current Covid restrictions). These are things that I confess I despaired he may never achieve during those early years on the TS journey, and I honestly attribute so much of this to the insights and resources I discovered here at Latitudes. He is testimony to the fact that there is healing hope for even very severe TS & tics beyond pharmaceuticals! These days there is so very much more available at ACN/Latitudes to help parents looking for solid foundations to base their quest to help their child(ren) heal naturally. Sheila's carefully researched books on are an invaluable resource https://latitudes.org/store/ while the comprehensive menu of conditions, and therapies,as well as articles by many acknowledged experts in this field, contain a wealth of information. I am writing this post as a testimonial, as I hope that the many visitors seeking guidance on these forums will also explore the main website, and discover answers to help their children heal more naturally. I am still here after all these years to "pay it forward" for the invaluable help I found at ACN/Latitudes. My prayer is always that others will find that same hope and encouragement here.
  12. 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
  13. 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.
  14. 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
  15. 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/
  16. 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.
  17. 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?
  18. 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.
  19. 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.
  20. 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.
  21. I saw that Carlson Labs makes a B-6 Liquid (4 fl oz -120 ml) sells around $13 on most sites
  22. I know a number of folks with TS also struggle with OCD intrusive thought patterns, so am sharing this helpful video here as well:
  23. 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.
  24. A really well done and helpful video on dealing with those Thoughts !
  25. Yes, they fit all regular light & lamp fittings. Only difference is the light spectrum they emit.
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