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  4. Hi ThreeAngels, You could always make an appointment with a PANS/PANDAS literate Naturopath and discuss with them. They may be able to help navigate things for you.
  5. Hello There Three Angels, Welcome! I know that it can sometimes take a long time to get a response on here - since the relative privacy that this forum offers means that it is not as immediate as social media and peopIe tend to check into it less often. I have a young teen with relatively new tics and ocd, so we suspect PANDAS. I can certainly agree that tiredness, caffeine, stress and going too many hours without food/water all seem to make it worse. We also find that gluten and dairy have a detrimental effect (this is not the same for everyone) and indeed all the usual "nasties" th
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  7. The post of this thread was edited for an important revision. Also, my co-author Sam Keating and I recently completed another genetic study about P/P, that is unusual in that it is quite different than a typical genetic association study. The work is done, and with exciting results, but it is not yet formally or informally published - we need some more time for some additional checking. So we can't show results, but you can read what the study is about via its registration plan, here: https://osf.io/ck5un .
  8. It doesn’t have to be pandas, I.e. born from strep, symptoms can come from any illness where your immune system overreacts. Look up cytokine storm on YouTube to get a understanding of how the immune system responds to an infection or virus and then you’ll get an idea of why there are so many different symptoms and responses. With our kiddo, the underlying problem is dysfunctional mitochondrial cells. When ever she gets an infection or virus her symptoms are elevated and she gets inflammation markers in her blood test. This means her immune system is building antibodies that are inflammatory. S
  9. Hi Carolyn, My daughter and I have been reading some of your posts from when Daniel was young. My grandson, Benji, age 8, has been struggling with tics for over a year now. We think "histamine intolerance" might be what he is dealing with too. We had already been following the Feingold diet because his mother was as a child and still is very affected by artificial colors, sweeteners and preservatives. The Tics do seem to be worse during high pollen seasons. This summer he also became much worse during swimming lessons but responded wonderfully from epsome salt baths and lotions as you sug
  10. Hi, Our Pandas doc never recommended IVIG or Plasmapheresis. The reason was, with our kiddo's illness, we would just be treating the symptoms and not the underlying cause. This of course could be very different in your child's case and could offer a period of much needed relief. At the time these treatments were available, we came across at least one of the underlying causes for our kiddo's Immune system disfunction be mitochondrial cell decency. Had her doctor not found the mitochondrial decency, her symptoms would be unmanageable and IVIG or Plasmapheresis would have been a consideratio
  11. I wanted to bump this thread. Enough time has passed where someone could share successes or failures using this treatment. I am specifically interested in managing pandas systems. We get a number of warnings over the years, that turn out to be misdiagnoses. Over the years, One of the most common reoccurring markers is inflammation. But inflammation never shows up on tests except for a kidney stone. I.e. I think her immune system is jacked up with an inflammation response rather than responding to a specific illness or injury. We know that her mitochondrial cells are deficient and she has had t
  12. Doc. say the vaccine is not a consideration for our kiddo. Her immune system is just too sensitive. We can't even give her supplements without going low and slow. (Update) We just went over our strategy, and kiddo is already on the recommended vitamin D, C and zink, we’re going to add some melatonin. DD’s pandas doctor won’t prescribe ivermectin because she’s been threatened by the AMA for previous prescriptions and will get in trouble if she does it again. I’ve been reviewing how the covid virus and the immune system works. I’m wondering if DD’s macrophage response is the one that
  13. This is very interesting to me. I can't wait to try Ivermectin. I've watched a video of Dr. MoBeen explaining how the immune system macrophages respond and he was explaining cytokine storm. His description sounded so familiar with regard to "inflammation" that I can't help but wonder if this is what is happening in our pans/pandas kids. When my kido's pandas symptoms get exasperated, her inflammation markers are elevated. More often than not, we test her for an infection and she ends up being positive for bacteria and then she get a treatment and her symptoms subside.
  14. My 15yo PANS daughter had both doses of Pfizer in June. She had a very slight increase in anxiety for a few weeks. I am very glad we all got vaccinated, because a member of our household had a breakthrough case and the rest of us did not catch covid. I do think it would have been worse for my DD to get covid rather than the vaccine.
  15. Kiddo was on acyclovir or famvir for years. Her titers did not improve and her symptoms did not improve enough to actually point to the antivirals as a positive. Her Rubella did go down with amantadine (169 to 14), but her coxsackie, and epstein-barr did not improve that I could tell. Her epstein barr was over 600 when we started and over 600 when we stopped, so if it went down it was not discernable on that test. It is possible her EBV titers were say 1200 in the beginning and 700 in the end, but that would not register on the test as both are over 600. Her symptoms have always been
  16. Would love to hear any follow up on your journey with coxsackie and antivirals. this thread came up for me in recent research. maybe someone can guide me to newer threads addressing this topic?
  17. Hi ThreeAngels, I just wanted to welcome you to the forum. I am not clued up on PANDAS beyond the basics, so hopefully someone with more knowledge will be along soon. However what you describe of your strep history, would make me definitely look more into a possible PANS connection to your tics, anxiety etc. Hope you find answers and effective treatment.
  18. Hi everyone. I've had an undiagnosed facial tic for at least 20 years. (I'm 41 now). I've been to a neurologist, had an MRI, been on a few meds (Klonopin is the only one I can remember). I even saw an acupuncturist. They just call it "tic disorder". Yesterday they got pretty bad, to the point where they I was grinding/tensing my teeth. It's mostly blinking/winking, neck tensing, nose clearing, etc.. and more dominant on my right side. Tiredness, caffeine, stress, going too many hours without food/water all seem to make it worse. I started looking up some ways to get relief, and saw PAN
  19. Ok, that is interesting...I didn't know that PANDA/PANS could present with no other issues. Will definitely persist in getting that blood test. Yes, I suppose anything is possible with this neck cracking. We will be getting an MRI on his neck to see if there is anything physical going on there. He says he does it because he needs to release it and it makes him feel better. The second neurologist asked him if he could control it then she put a timer on and asked him to not do it for a minute. He didn't do it. That was her test, I suppose...for what, exactly, I don't know because I kn
  20. Hi Deanit Just 3 quick points ---- PANDAS/PANS can cause tics without "personality changes" and If there is a skeletal imbalance, that can cause the neck cracking tic - not just "diet or anxiety" - that is why I mentioned the chiropractic evaluation and possible NUCCA treatment. With the many things that can cause tics - the clearcut line in dx TS from other tics is a lot more blurred.
  21. Hello, again, Chemar! Yep, we are doing all the things you mentioned except for the nucca massage…I haven’t had any luck one here; however our pediatrician will ask around for a rec for kids. She also gave is a script for an mri on his neck to make sure there is not anything physically wrong there. (Can u imagine a 6 year with a neck tic old sitting still for 20 minutes?) We also have the big scratch allergy test coming up. Things we have done: Daily vitamins: mag fish oil b complex multi Vitamin d and k spray we are now gluten free cut
  22. Thank you @MLeefor your response. I will keep the diet and supplements going in the hope that it will improve them. Are the natural flavours in supplements bad??? Am I better using adult supplements and halving the dosage?? He has mild asthma but hasn’t caused him problems in a few years were he would have picked up a few chest infections in winter. Around the 10th June he was a bit chesty with a cough and I thought he had a chest infection. Due to convid, my doctor wouldn’t see him until he has a negative test. By the time we got test and results his chest had cleared a lot so we n
  23. Hi @kuma how are things now with the tics and the diets etc?
  24. Hi Missy81, So sorry your child is experiencing an increase in tics. For us, it took many many weeks to see a change, longer than 3 weeks after we made food changes. We also did a finger prick blood test and tested for IgG food intolerances. So we knew what foods could be an issue. Gluten and dairy came back as did eggs. But everyone is different. We did this test through a naturopath doctor. You may also want to rule out PANDAs which is caused from strep. Has your child had strep recently or a lot when younger? I understand the stress you are feeling. Sheli
  25. Hi everyone, I am new to this…. A very concerned and worried Mum. I feel my world is crashing down. Other than the odd shoulder shrug bearly noticeable, there was the odd eye roll when on the computer gaming and when tired. Nothing that worried me as it wasn’t really noticeable at all. A week of good weather we were in the garden a lot, playing a paddling pool, football etc. Had the odd ice cream at Granny’s etc. Got a bit of sunburn and after sun was applied. Temperature was between 29 and 31 degrees. Had an ice cream at the ice van Sat. Zoo on Sunday and had a iceberger ice
  26. Deanit, I don't think it beneficial to be "searching" for more tics? The old criteria for a dx of TS really are rather arbitrary, and with so many other reasons now known for why kids develop tics, it would be a lot more beneficial to focus on identifying potential tic triggers when a tic emerges, and implementing things that help alleviate. On your previous thread I mentioned a number of things that we found helpful when my son had a neck tic (NUCCA, epsom salts soaked warm cloth on neck or magnesium lotion applied etc) Not sure if you have tried any of those, but our experience di
  27. Thank you for your valuable sharing and input. Appreciate it so much. Your sharing is so important to us.
  28. This article by Andrea Frazier is from 2018, but this valuable parent perspective is still so very relevant! Your Kid Has Tourette’s? 5 Ways to Feel Less Overwhelmed (It Works!)
  29. Ok, so I’m still here trying to figure this all out. My son had a persistent cough and then started a couple months later to crack his neck. Pediatrician says she thinks the cough is an allergy and gives is a medicine protocol for a month. During the month the cough continues and the neck cracking ramps up. Until the second to last day of the medicine protocol, and the cough goes away. Now we are left with neck cracking. It’s been about ten days… I have mot noticed any other vocal tics. Is the neck cracking considered one motor tic or two? The neurologist specialist that we met with (
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