Jump to content
ACN Latitudes Forums

Leaderboard


Popular Content

Showing content with the highest reputation since 12/26/2019 in all areas

  1. 1 point
    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 anxiety and narcolepsy, another with ADD/ADHD, we had some of these mild tics off and on. I'm sure they are related. I recognize the parental panic. The kids need examples of dealing calmly with these issues. All we can do is find someone good to work with and continue to try the next thing.
  2. 1 point
    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 again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.) We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up. Hope I helped or at least gave hope. Good luck.
  3. 1 point
    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.
  4. 1 point
    bigmighty

    IVIG study results

    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 continues to become symptomatic sporadically even while continuing on daily antibiotics.
  5. 1 point
    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


×
×
  • Create New...