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Showing content with the highest reputation since 11/24/2019 in all areas

  1. JessL

    I’m angry

    Ugh. Big hugs. I'm so sorry, I really feel you. I was where you are just last month, emailing and calling our doctor in tears asking if this is how our lives will be forever now. I still wake at all hours of the night with a hundred questions and thoughts etc, waiting for the night time wake ups of screaming etc. It feels neverending. PTSD for parents with PANS/PANDAS is SO real. The caregivers need help too. This is a lonely wild ride. If you're able to find a support group I know a lot of parents find just venting to people who understand therapeutic. Xxo
    3 points
  2. I completely understand with needing to hear from others. We tried so many supplements over the years. We also did neurofeedback (muscle testing) and cognitive behaviour therapy with a child psychologist. Looking back the most important things that helped were - clean diet (real food not processed) with low oxalate foods, tonsil and adenoid removal, and learning how to "fight" his ocd and "worry brain" with common sense techniques that were given to us by the psychologist. Those techniques continue to be useful to this day, but only when he's not in a flare. When in flare it's too hard - his b
    2 points
  3. Maya

    PANS Testing and Bloodwork

    I am working on getting my Insurance to approve a visit to a clinic in Tuscon. Doctors don't believe Strep is to blame because his titers are low. They feel it's depression 🙄 Thank you for the blessing❤️
    1 point
  4. Thank you! Gosh I'm waiting for a miracle for our sleep, my 5 year old pans kid has never slept more than a few hours at a time and never in her own bed, going to hunt down that dawn huebner.
    1 point
  5. MLee

    Vitamin B6

    Tropea22, I may look into this as well. Thank you Chemar!
    1 point
  6. tropea22

    Vitamin B6

    Hi MLee, I was never able to find it but, thank you to Chemar. I will search for Carlson Labs.
    1 point
  7. Just to add - I would definitely recommend the T & A removal. I believe it made a big difference both in ridding him of an embedded infection and preventing further ones.
    1 point
  8. Thanks Mama3 for replying my post. I cried almost every night the first week, I regained strength after reading the posts from this forum. I know I’m not alone in this long battle. {{Hugs}}
    1 point
  9. Just curious how many of our PANDAS kids are affected by swimming in chlorinated pools. Last year when my son was at his worst (we didn’t yet know what was going on) we noticed a dramatic worsening of his tics as soon as he started swimming. We then didn’t try having him swim again until this weekend, 7 months after that last time (he has since been treated for his PANDAS with antibiotics). We were terrified his tics would start again, but this time, thankfully, there was no negative effect. With camp around the corner, I do worry about him swimming every day, though. I ask
    1 point
  10. Thank you Chemar. You have so many good points. I really appreciate your kind perspective and insight. I will take them to heart. And you are right. You only have your youth once.
    1 point
  11. wisdom_seeker

    Pans and mold

    Oh do I understand the stuck and pissed, and $$$ stressed and tired. If you want to talk over what you've already done and seen, and brainstorm, give me a call. I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources. And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway" and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps". So if I can help with the detective work, I will. Where are you located
    1 point
  12. Has anyone done CellTrend testing for auto-antibodies? This test was developed for POTS and ME/CFS, but surprisingly my son tested high positive for over half the 11 auto-antibodies in the panel. I'm treating this as very meaningful for likely AE. But would our insurance agree and pay for IVIG or PEX, based on a research test from Germany? Still it's enough for us to want to get serious about getting evidence to justify IVIG or PEX (both to us, DS20 himself, and insurance companies). However, years ago we'd spent $$$ for the Cunningham panel and insurance completely discou
    1 point
  13. Cmac

    Length on Antibiotics

    Pennmom—yes, his intrusive thoughts were the last thing to go. He had hallucinations (he saw werewolves all over the place), ocd—lots and lots of rituals like running in front of the back door a certain number of times before he could enter the house, extreme separation anxiety and extreme anxiety in general, and emotional lability. Those symptoms began to ease up gradually between 3-7 months from the time of the first onset in August 2018. The hallucinations and accompanying hand movements were the first clue that something was terribly wrong in August 2018. Looking back it seemed like t
    1 point
  14. mcbull

    New Hope New Year

    Having raised a kid now to college with constant PANDAS struggles, I am convinced immune health is key. We had a period of antibiotics and then tonsillectomy which seemed to provide some relief. But continue to manage separation issues and particular obsessions. Currently using prozac and pretty aggressive CBT (ERP). Having recently overcome significant digestive issues, I am convinced the key to strong immunity is a clean and healthy gut. My kid was exposed to antibiotics at birth, had chronic constipation as a toddler, and was OCD symptomatic at age 3-4. We have a sibling with anx
    1 point
  15. Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. .. The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it aga
    1 point
  16. We did not see dramatic improvement for my DS 14, until he was put on the encephalitis protocol for IVIG, which is monthly HD. He has had 5 so far. This was started after limited success with weekly LD IVIG. He has shown lasting improvement with each treatment. Tics gone, OCD 90% gone. He still has anxiety, focus issues and sound sensitivity. We are hoping for some relief from those symptoms with future treatments.
    1 point
  17. It doesn't actually say that all of these kids remained symptom free. I only skimmed, but one shows a kid who kept getting strep with re-emergence of symptoms each time (patient E). After IVIG, at every new strep infection the ocd returned and the child went on on a treatment dose of augmentin for up to a month. It looks like the kid was on prophylactic antibiotics, too but was getting new strep infections/symptom re-emergence anyway. That's not to say that the IVIGs weren't beneficial or positive. But I wouldn't call this 100% symptom free since the child obviously still has PANDAS and c
    1 point
  18. 1 Psychologist in Michigan: MICHIGAN Dr. David Wartel Psychologist (specializes in CBT) 248-626-1330 West Bloomfield, MI Several docs in Ohio: OHIO Dr. Cheryl Leuthaesuer Integrative Wellcare 216-696-2320 Richfield, OH Dr. Ali Carine Integrative Pediatrics 614-459-4200 Upper Arlington, OH *Dr. Allen Lewis (Leading PANDAS Physician) Integrative Pediatrician 614-245-4750 Gahanna, OH will treat more complicated cases involving PANDAS and Autism Dr. Jan Kriwinsky Pediatrician 216-831-7337 Beachwood , OH http://pandasnetwork...iders/#MICHIGAN
    1 point
  19. when i was reading your post, i thought it was written by me!!! My child flipped on magnesium but flips on EVERYTHING we have tried. It turns out that she went crazy on everything because she had severe yeast/fungal issues. She is now on Amphoceterin and doing well and also tolerating more supplements/vitamins. It was a hellish 13 years and now we are finally seeing some results. Also possitve for lyme/bartonella. We treated her with the bactrim and mino. and she was a mess. Again, I think because yeast was out of control. Hope this helps.
    1 point
  20. MaryAngela

    Vaccines and Pandas

    @bws1565 My DS now 15 had PANS symptoms since he was an infant. He didn’t have MMR until he was 9 or 10 years old. I believe he had a reaction to DTaP at 6 months old, though.
    0 points
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