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Chemar last won the day on September 14 2017

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  1. New motor tics every year

    Hi there If the tic increase is linked to this time of year, could it possibly be seasonal allergies? Those don't always necessarily have a "stuffy nose" as symptomatic Has he had any allergy testing done?
  2. Supplements can impact different people so very differently (just like meds) so it's always hard to say. Our physician did say not to use it long term. My son was on it a few months. It really did help the vocal tics for him. It's an amino acid
  3. Hi The only thing that helped when my son was dealing with very loud vocal tics was L-Carnitine, as suggested by our physician.
  4. bumping up a new member post in case anyone can help
  5. Hi We had the same problem as my son has MCS (Multiple Chemical Sensitivity) CVS pharmacy has their own brand ibuprofen in a dye free version. We have always used primarily natural treatments of which some have antimicrobial properties and can help pain relief (eg Oil of Oregano capsules) Also white willow bark instead of aspirin, but be cautious if salicylate sensitive.
  6. Hi I moved it to PANS forum for you.
  7. Magnesium lotion

    Hi We used to rub it into the areas where tics were prominent. He especially benefitted from having it rubbed into back of neck and between shoulders. We used it when there wasn't time or opportunity for an Epsom Salts bath
  8. Magnesium lotion

    Yes, and yes We used Epsom lotion (magnesium sulfate) I think only Kirkman's makes it now. We used to make our own, then used Mortons! So sad they discontinued it.
  9. Hi I am sure Sheila will respond as soon as she gets a chance but did just want to say that the infectious disease specialist didn't give you accurate information. I am by no means clued up on it, and don't know what studies they were referring to, but I do know that kids with PANDAS/PANS can and do frequently have tic disorders as part of their symptoms, or as an additional co-morbid condition. That said, not every kid who exhibits tics has PANDAS/PANS. There are many varied things that can be underlying tic disorders, and they are not all mutually exclusive. That's why keeping a journal/log is so valuable in trying to find what sets the tics off, and what calms them. It may really be best, if you feel there might be a chance of PANDAS, or PANS, or at least want to rule it out, to see a specialist who actually knows about this and will run the kinds of tests that are documented. The parents on the PANDAS/PANS forum here might be able to give more info? I hope that helps a bit till you hear back from Sheila.
  10. Nothing is working😢

    Hi My son had acupuncture as well as biofeedback resonance therapy. 2 separate treatments but our therapist performs both. Neurofeedback is a completely different treatment, and we were advised by our physician never to have it. Some other parents on this forum also reported bad reactions from it for TS kids
  11. Fulvic Acid

    Hi No idea related to PANS, but it is remarkable for eliminating leg cramps at night, plus extra stamina. We have been using it for almost a year, in liquid form.
  12. Success stories?

    Hi Hopefully some of this may help and encourage.... **There's an older thread here on some treatments that have helped **We also have a "Useful" thread pinned here **And I have a thread from waaaay back on the treatments that helped my son
  13. How much Natural Calm?

    Hi mlee The magnesium in Natural Calm is citrate, so can have a laxative effect. I would stick to the recommended age appropriate dose
  14. Hi So sorry you have not had responses and hope someone with more knowledge may be able to offer advice. My uneducated suggestion would be to look into PANS if both children are showing similar symptoms. Here's that (((HUG))) of support, as I know only too well how scary all this can be. I do hope you get answers and effective treatments for both your children.
  15. Hello hay78 So sorry we missed your post! How are things with your daughter now? Any new tests results?