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  3. Hello, I know it's been awhile since your post but if your like me you are still scouring for anything that helps. I been there and it was the scariest time of my life. My son was 4 when he first had mild pandas (test confirmed titers high from strep) that was treated for years with azith successfully from integrated med pediatrician. He was 8 went it came back full force. Tics, OCD, AGGRESSION, anxiety. And it was as bad as you mention, sometimes worse. I am not a Dr but I will share with you what we did. First our Dr got us back on azith and referred us to an immunologist. This has been a long expensive trip that we are still on. As for what we could do at home: 1. He could not attend school. We ended up having to homeschool. 2. We had to eliminate anything that raised his dopamine. Too much Dopa we found was causing the rages/tics. Special diet...no artificial colors, no artificial flavoring, no enriched products (esp. folic acid , copper, choline nd B12 that affects his OCD.) I know I say no but later on we could have 1% but there is always tic flairs. The rest of the elimination gives a little room. We also found from Dr that he was lactose intolerant so any food sensitivities should be addressed as well. And no yogurt bc of added probiotics. 3. Supplements there is a lot of crazy stuff out there so proceed with caution. There's a lot of stuff both supps and prescrip that didn't work. Here's what we use that helps us. Natural vitality calm-ionic magnesium citrate. There are several options. We are currently on the gummies but at first I put unflavored powder in lemonade or anything. This helps with tics and anxiety for us. Next big help is motrin we use kids liquid dye free equate brand if avail. This brings down inflammation. We also use Homeolab USA- Kids Relief Syrup With Calming Effect - Grape Flavor. I am not big on homepath but I tried a lot and this seems to help. I think it's the valerian but I don't know for sure. And myo-inositol (not inositol) powder for ocd. Protocol for lLfe - pure - no additives. These are out staples, twice a day. With chewable iron once daily bc levels are low. When things are real bad we get refill of azith from Dr. We went through lots before we found one that didn't raise his Dopa. We make sure when using antibiotics to supp with probiotics Culturelle Kids Probiotic - packet with Lactobacillus GG only. Some probiotics have neg affects. Everyone is different. And lastly, when things are really really bad a quick thing to help lower Dopa is kava kava tea. (Not kava) we use yogi. We don't overuse bc it can bring levels too low. But it helps us. Yogi brand is good. It seems like for us it's a balancing act. Tics rage anxiety high when Dopa high, OCD high when Dopa low. So just trying to keep even keel as we go through numerous costly not ins covered treatments. I have no idea how anyone else does this. We consulted our Dr for all these, please do the same if you think any will help some have side effects. Here's my orig link as to why some of the supps listed I know it's for traditional ocd but it seems to help us some out of everything out there: http://www.alternativementalhealth.com/natural-healing-of-obsessive-compulsive-disorder-ocd/ For us it has been better by not limiting screen time. I found that it just seems to help to focus on something. Just have to watch the natural Dopa that could occur from it. Also being able to show rational online to support things I ask him to do. Things here are ever changing but they are so much better than they were years ago. ( I think puberty kicking in is helping too. ) We can have some sense of normalcy. But it's been a long winding road of patience understanding and support. We burned a lot of bridges and threw a lot of norms by the wayside. Just remember that bright loving kid is still in there and what they are doing is not really them. (And that they really don't mean it when they say horrible things.) Our son is 15 now and in high school doing well. Still in treatment, but 80% better. It WILL get better. (Believe me I had doubts-lots.) Wishing you peace.
  4. I wanted to add that I was listening to the Dr. Robert Malone podcast regarding the vaccine. At about 1 hour 39 minutes he talks about the spike proteins crossing the blood brain barrier which can cause inflammation and other problems. It’s interesting since this is what the antibodies do in PANDAS…cross the BBB and cause inflammation. I can’t help but think there is a similarity in the two. I guess in time maybe we will know.
  5. Thanks for your response. My thought on the time between the vaccine and the onset is that antibodies build over time. Her onset possibly occurred when antibodies were at their highest. She did also test positive for micoplasma so that could be a factor. I sure wish we knew for sure. I’ll check on reporting it. Thank you for the info on that!
  6. I am also very appreciative of you sharing this. It is so much harder to pin the issue on the vaccine when there is a couple of months between the shot and the sudden onset. I take it that it was the first shot in early June, and then the 2nd shot 3 or so weeks later, and then the flare was late August. They typically don't follow issues after 6 weeks, which is a problem because then anything that happens after 6 weeks is immediately dismissed (which is very wrong, in my opinion). Have you considered reporting the event to the VAERS data base? Anyone can report. There is also a survey for P/P patients and reactions to the Covid-19 vaccine being run by the International Pans Registry (IPR). My guess is that she would have to sign up herself to do it. I don't know if there is anything in the survey criteria that would exclude your daughter, but it is very important (from a science point of view) for this kind of story to get included in such a study, and at VAERS (even though they will tend to discount on account of the timing).
  7. Hello Missy81 how is your son doing mine 7yr old started doing that since August of 2021. However his tics have changed to different ones I have read a lot of things about this topic but it’s very frustrating for us the parents see them. I had mine in gluten free diet but it didn’t really make any difference not sure what really causes this but what I can recommend you is to keep your kid active and give him a lot of water. I just hope one day my kid stops doing it but only God knows when.
  8. My daughter has had a throat clearing tic as well as a squeaking tic. BUT she is doing remarkably well and is not medicated. The average person would never know she tics. I know that vocal tics are viewed with dread, I just want to assure parents out there that some vocal tics are no worse than other tics.
  9. Hi April, I was wondering if you ever pursued treatment with Dr. Lazarus? If so, how did it work out? Best, Jen
  10. I don’t post much but am a long time member. I first posted in 2010 over a year after my daughter recovered from a severe 1 year long episode of PANDAS anorexia. That post is still available if you do a search. She was 10 and had overnight sudden onset severe anorexia /OCD. She had high aso titers for almost a year. There were very few people who could help us at the time so it took 3 months to even figure out the issue. She eventually returned to normal almost as suddenly as it came on. She has been great ever since. I posted another update in 2016 when she was starting college. She had no further PANDAS related issues until this year. She rarely was sick (probably because of her over reactive immune system) but we always continued to have her tested for strep even with a slight sore throat. She graduated from college in May of 2020. She was accepted to medical school later in 2020 and started in July of this year (2021). Her school was very pushy with the COVID vaccine which we did not want her to get but she got it anyway because she felt she was going to be prevented from fully participating in everything without the vaccine. I am not anti vax at all. We did delay her 12 y/o vaccines until she was 15 and she got them all separately. I just felt like the COVID vaccine risk vs benefit for her did not warrant it at all. Nevertheless, she received the vaccine in early June. When she started school in July she was loving school! She had met many new friends and was doing great. Fast forward to the last weekend of August, I received a call at 3 am from my daughter. She said for the last 24 hours she has had very severe anxiety and could not sleep at all. She said it started in the middle of the night before so she had not slept in almost 2 days. Things were getting really bad and we had to fly her home. She proceeded to be unable to sleep as well as unable to study. She said she was having trouble concentrating on even simple usually easy tasks. She was completely non functional as a medical student and after a few days took a short term leave from school. Before we even flew her home she had seen a psychiatrist who immediately put her on buspirone and gave her something to help her sleep. She was able to get small blocks of sleep at least but the anxiety was unchanged. She was able to eat but not eating very well. My normally super independent grown daughter was unable to make any decision and she was also frequently coming in my room at night and sleeping on the floor as if she were a child. She was a completely different person and we felt it had to be a PANDAS type situation. Fortunately a lot has changed in 13 years and we were able to get her in with an autoimmune neurology specialist. She typically saw pediatric patients but agreed to see my daughter due to her past history and her current situation. We did extensive blood work. This time the strep was negative. She had a positive monospot test (no recent illnesses) but her Epstein Barr numbers came back negative. She tested positive for both IgG and IgM antibodies for micoplasma (again no recollection of feeling poorly). She was given a course of antibiotics. We weren’t seeing any changes for the better. The buspirone was not seeming to help her anxiety/OCD at all. She said the only difference was she was not experiencing the physical symptoms she was the first week or so like the racing heart rate. The difficult part of this happening to your grown child is that they get to make their medical decisions. She was convinced that this was not autoimmune related and was annoyed I was asking the doctor about the vaccine. She kept blaming herself for everything. It was very hard to watch my typically positive energetic confident daughter turn into a self doubting mess. The doctor wanted to put her on a 5 week course of steroids but she was pushing back saying it would make her gain weight. She was not getting better and started getting pretty depressed. About 8 weeks into this (and 9 pounds lighter) with no improvement she made the difficult decision to take an extended leave from school and she agreed to start the steroid. At the same time, her psychiatrist put her on a low dose antidepressant. Literally a day after starting the steroid I noticed some changes in her mood and she seemed to be doing a little better. She was sleeping better too. She still was definitely having struggles but there was a definite improvement. Some time during about the third week of the steroid she became much better…almost to baseline. It has now been almost another 3 weeks and I feel her demeanor is mostly back to her normal happy self. She is eating well and has put back on a few needed pounds). This was, however, a big blow to her confidence as a medical student. She still believes it might have just been her being stressed but her dad and I know better. She will continue with counseling that we started to help her get her confidence back so she can hopefully return to school as the same caliber student they admitted. We still do not know for sure what caused this to happen after so long. My guess is that it was either the micoplasma or the COVID vaccine or perhaps both. Something turned her monospot positive too but it was not mono. We will be seeing her doctor in another couple of weeks and hopefully get blood work done again. I can tell you one thing is for sure. As they say…”out of abundance of caution” she will not be getting any COVID boosters. I just wanted to reiterate that I’m not antivax. I think the COVID vaccine has saved many lives. I just think that there is a possibility that it could play some role in autoimmunity. We just don’t know the answer yet. Until then everyone has to do that they think is best for their own situation. I just wanted to add my daughter’s story as just another case history.
  11. Hello Raffi I am just checking back to see how things are going with your son now?
  12. Dear Chemar, thank you for making this clear to me.
  13. 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
  14. 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.
  15. 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
  16. The short answer is yes, this sounds exactly like PANS/PANDAS. There is a great deal of anecdotal evidence of kids with this disorder that had issues before, but had a period in their life where the symptoms just blew up. (I was personally one of those kids.) I wouldn't rule it out based on the negative strep test. Here's a really good explanation from PANDAS Network about diagnosing PANS/PANDAS, and how negative strep tests don't necessarily mean the absence of strep. https://pandasnetwork.org/understanding-pandas/diagnosis/ I have Asperger's, and can tell you that while the signs of it became stronger later in my childhood (8-9 years old), this does not sound like Asperger's/autism spectrum disorders. While some of the symptoms become more apparent in the teenage years, I've never heard of them being abrupt-onset or becoming more apparent this drastically, as you said. I would suggest you seek out someone who treats PANS/PANDAS/basal ganglia encephalitis. They can run tests that would have a better chance of finding infections-PANS kids are notorious for not showing "normal" signs of infection, e.g. a sore throat for strep infections. There's also the gold standard test for PANS/PANDAS kids, the Cunningham Panel, that could be run.
  17. Hi My 14 yo daughter has had a history of tics and OCD and intrusive thoughts for most of her life but didn't cause a lot of problems. She used to be social and had friends, was never violent and was mostly typical. During covid her issues have really become very bad. She was tested for strep and mono back in May but they were negative. Over summer she has changed tremendously. She has severe behavioural issues now. She started to become extremely aggressive with me to point of beating me up when I try to get her off the screens. She is obsessed with drawing and using her computer for mindless things. She has cognitive decline. She is completely disorganzied. She acts autistic now with very few social skills. She can barely get dressed or up and she is very difficult to communicate with. She can't concentrate on anything anymore and can not be reasoned with. She refuses to do her homework/ But most of all she is very violent when you try to interrupt her from her obsessions. She is easily confused. Does any of this sound like Pandas/Pans. I dont know if this is autism that cropped up as a teen which doesn't really make sense because it is so extreme, or schizophrenia or what. I am really worried because this has been bad for at least 6 months and it just keeps getting worse.
  18. 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
  19. 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
  20. 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.
  21. 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.
  22. Dear Chemar, what is the difference between Tourettes and Pandas? Are there any success stories with natural therapies?
  23. Certainly! Glad I could help. I looked around online, and as far as I can tell, any kind of Lyme blot test is considered the Western blot. I guess different labs just refer to it differently? Here's a good link that explains the different tests, and which bands on the Western blot carry more significance. https://www.lymedisease.org/lyme-disease-test/
  24. 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/
  25. 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
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