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  4. Hi @NurseMom21 How are you? I was looking into CBIT therapy and recalled that you are waiting for the same therapy for your daughter. Did your daughter start CBIT? Can you please share your experience?
  5. You could also try a GABA supplement, as well as trying dietary changes. Like removing gluten and dairy. Dietary changes can take many months to see improvement.
  6. You may want to visit a functional neurologist. I had read that that this is most helpful when tics are predominantly on one side. (Take this with a grain of salt as I can no longer find where I read this.) I hope so much that you can find some improvement.
  7. Hi Everyone, When I was a child I had tics for several years until the age of 10. They gradually reappeared around the age of 30 and have continued to worsen since then (around the same time my neurological symptoms of autonomic neuropathy began in earnest, including POTS, and have been worsening since then). I am now 47 - my symptoms have been around and on the increase for 17 years. My autonomic neuropathy symptoms have also gotten quite bad as well. I am barely able to work. The tics are debilitating. Mostly simple, though occasionally I do a small kick or shake of my arm because there
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  9. This post made me cry. i am on these boards for years and never looked into B12 deficiency before. Recently, due to some severe symptoms I bumped into B12 deficiencies and all related physical and psychological ailments. My daughter has fit these ever since she was a baby. I am supplementing with good results (i think... we just started).
  10. My DD had Covid last march with no ill effects. My husband and me were much sicker, and we both turned out well after several days. I would not do the Covid shot due to its not being FDA approved! It has emergency use authorization only!
  11. Thanks for all the tips. I've tried removing milk before and didn't make any difference so we continued to let him have that. But I never thought about eggs maybe I should try for a few weeks and see if it works. About a week ago my son started to have vocal tics again and the interesting part is that most of the motor tics became not much noticeable, the vocal tics have been up and down, but today is by far the worst alsmost nonstop all day long.
  12. Greekdude. I am just reading this now. I hope your son has had treatment in the mean time. Your son sounds like mine. Also anxiety, OCD, sleeping with me, sensory problems, periods of sudden severe separation anxiety, and AN symptoms started at age 11. Diagnosed at age 12 following major strep induced flare. Treated with antibiotics which did not do much, then tonsillectomy and IVIG. After 4-6 months he was a different kid. No more anxiety, OCD, food restriction, sensory problems, sleep problems. He is now 18 and he gets symptoms sometimes with infection but they go away. About once a year the
  13. I also am interested in what this test it. And is it part of the whole work up for PANDAS or do they do it based on specific symptoms or patterns?
  14. Tics can also have an infectious origin. Does she have any other symptoms? Frequent urination, sleep problems, mood changes? If so it maybe good to check for an infection. If the source is an infection changing diet will not really help. But as others have said, it can take a while to see effects. And many kids have tics and often they just go away.
  15. wisdom_seeker thanks so much for your response. I have some follow up questions. Did your son get four rounds of high dose IVIG? You mentioned tick-borne infections; how were they diagnosed? My son was diagnosed with PANDAS at age 12 (had had symptoms since he was very little, major strep induced flare at age 12 that led to diagnosis). He had a tonsillectomy and high dose IVIG in the six months after diagnosis. Six months after IVIG I realized I had not worried about him for months. He was a different kid. He is now 18 and he usually gets some symptoms with infection but they go away. About
  16. Gluten antibodies especially take a long time to resolve. I know it can feel discouraging.
  17. Hello dutragirl Sorry to hear of the development of tics for your granddaughter, but take heart, very often tics are transient in young children - or you may find another trigger that is causing them. Before I make any further other comments or suggestions - I see you posted on our PANS/PANDAS forum rather than the TS/Tics forum, so I am wondering if you suspect an infection connection to the tics?
  18. My 4 year old granddaughter out of no where just stated having tics. On April 13, we started the elimination diet. We removed gluten, dairy, corn, soy, processed sugar, chemicals, artificial color and flavoring, preservatives. We are giving her supplements. So far the tics still exist. I am thinking of not waiting the 28 days to reintroduce a food one by one, since it doesn't seem to be a trigger. Help please with your advice.
  19. Hi Chemar, thanks so much for the response. She had a follow up blood test today. The dr ordered another CBC as well as a test for reticulocytes. Unfortunately I won’t get the results for at least two weeks as her dr is quite busy. I’ve read quite a bit that tics can be connected to immunity so I don’t think this can be a coincidence. She had been doing so well I honestly thought the worst was over, but watching her making faces at dinner last night was difficult. I remember when this first started sometime at the end of January. I asked her what she was d
  20. Hi Did they make any suggestion on why her RBC & WBC counts are down? Any treatment suggestions? The fact that they are below normal may be indicative of an underlying issue that in turn may be triggering tics. An ASO <20 would indicate no strep infection as far as I know. https://www.healthline.com/health/antistreptolysin-o-titer
  21. My dd’s tics are noticeably worse today. She had blood work done recently which revealed below normal range of both red blood count and neutrophils (a type of white blood cell). Also her strep titres shows <20. What does that mean? That she does have strep or she doesn’t? The dr said every thing was normal other than blood count. Does anyone have any insights for a worried mom? Has anyone else experienced problems with blood counts?
  22. Specifically the ingredients tolnaftate or miconazole nitrate?
  23. We are currently treating for mold. Beginning of that work for our family and daughter. She primarily uses NAC as a binder, which also has some benefit for impulse/tics. Not 100% sure yet which thing it is impacting yet...Also, looking into histamine and methylation. Almost to the nasal part of treatment.
  24. My PANS kid (DS21) and I are very happy that he's had the COVID vaccine series. He's just had both Pfizer shots and did OK. Unpleasant headache and some fatigue for ~36 hours starting the day after the second shot, as well as a bad arm ache. He's more sensitive to pain due to chronic pain. I treated it with NSAID. FWIW, we timed his vaccine jabs to be 2 days before his regular anti-MCAS mast-cell-stabilizing infusions. Those include hydration plus meds like Benadryl and an IV NSAID. It was somewhat scary, but I would do it again in a heartbeat. For us is a huge feeling
  25. Hi Tropea Interestingly, where they benefit greatly from Omega-3 EFA - some kids with tics, specifically TS tics, seem not to tolerate fish oil well - but do better with Omega-3s from other sources eg flaxseed oil etc I know we once had a thread running where there were links explaining why the fish oil may exacerbate some kids' tics - but not too sure where that info is now. I will see if I can locate it.
  26. We tried it for about a year and a half and made zero difference for our son. We tried many supplements and dietary changes, and the only time we ever had any improvement was with antibiotics.
  27. Does anyone have experience with the COVID vaccine for kids with PANDAS? My son’s neurologist advised against it based on really bad flares for PANDAS kids after the flu vaccine , and the similarities between the vaccines. I heard about one young adult who ended up in a really bad flare a couple of weeks after the second shot. Steroids did not help. Any other experiences?
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