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Chemar

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Chemar last won the day on February 25

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