Raffi Posted October 24, 2021 Report Share Posted October 24, 2021 Hello, I am the mother of an 18 year old boy with Tourettes syndrome. I have been following this forum with great interest for a long time, which is a blessing. My son is on a junk-free, gluten-free, casein-free, soy-free and corn-free diet. He is taking various supplements without success. I wish I could ask Chemar for some information given his testimony of his son's great improvement. Thank you with all my heart. Link to comment Share on other sites More sharing options...
Chemar Posted October 24, 2021 Report Share Posted October 24, 2021 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. Link to comment Share on other sites More sharing options...
Raffi Posted October 24, 2021 Author Report Share Posted October 24, 2021 Of course, I have to ask you if the post I published is in English? Link to comment Share on other sites More sharing options...
Raffi Posted October 24, 2021 Author Report Share Posted October 24, 2021 Hello, thank you for your availability. It all starts at the end of the fifth grade, my son starts to swear, then vocal and motor tics and obsessive compulsive symptoms appear.After many trips to the doctors, they tell us that it is Tourettes syndrome, while some talk about It drome Pandas.At the time from blood tests emerged elevated streptococcal TAS, elevated Epstein virus IgG and Mycoplasma. we do three cycles with the total remission of symptoms. Our son was fine for four years.More than two years ago after a flu, the vocal and motor tics reappeared and they have never gone away.At the moment the worst tic is the vocal one, it's very strong, it's a verse .We can't eradicate it .. Do you have any suggestions? Thank you Link to comment Share on other sites More sharing options...
Chemar Posted October 24, 2021 Report Share Posted October 24, 2021 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/ Link to comment Share on other sites More sharing options...
Raffi Posted October 24, 2021 Author Report Share Posted October 24, 2021 Dear Chemar, what is the difference between Tourettes and Pandas? Are there any success stories with natural therapies? Link to comment Share on other sites More sharing options...
Chemar Posted October 24, 2021 Report Share Posted October 24, 2021 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. Link to comment Share on other sites More sharing options...
Chemar Posted October 24, 2021 Report Share Posted October 24, 2021 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. Link to comment Share on other sites More sharing options...
Raffi Posted October 25, 2021 Author Report Share Posted October 25, 2021 Dear Chemar, the conventional approach with the use of antibiotics has never benefited us, which is why I am looking for testimonials from those who have had improvements with natural treatments. Thank Link to comment Share on other sites More sharing options...
Chemar Posted October 25, 2021 Report Share Posted October 25, 2021 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 Link to comment Share on other sites More sharing options...
Raffi Posted October 26, 2021 Author Report Share Posted October 26, 2021 Thanks Chemar Link to comment Share on other sites More sharing options...
Chemar Posted October 28, 2021 Report Share Posted October 28, 2021 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 Link to comment Share on other sites More sharing options...
Raffi Posted October 30, 2021 Author Report Share Posted October 30, 2021 Thank you Chemar, you have been very kind, regarding the symptoms, I am led to think that Pandas and Tourettes may be the same thing, in the tourettes it is said that it is genetic and doctors do not go to look for infectious, bacterial or other causes nature, while in Pandas there is bacterial and viral evidence. Many people with Tourettes syndrome have also found elevated antibodies to Streptococcus. I am led to think that the natural treatments that are used in the treatment for Tourettes can be used to treat the Pandas. Link to comment Share on other sites More sharing options...
Chemar Posted October 31, 2021 Report Share Posted October 31, 2021 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 Link to comment Share on other sites More sharing options...
Raffi Posted October 31, 2021 Author Report Share Posted October 31, 2021 Dear Chemar, thank you for making this clear to me. Link to comment Share on other sites More sharing options...
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