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Everything posted by bigmighty

  1. DS 22 had his tonsils out in 2016 and had IVIG in June 2020 (prior IVIGs in 2011). He went off of antibiotics in October 2020 and had a speedy return of many PANDAS symptoms. I wanted to share with you two things that have helped him the most - 1. After reading the Frontiers in Microbiology study of Gut Microbiota in Children Affected by PANDAS (https://bit.ly/39pPmxP), we asked the internist about supplementing with l-tyrosine (https://amzn.to/36k62oH). She agreed that we should try it. 2. After reading the NIH study on Differential Bindings of Antibodies in PANDAS (https://bit.
  2. Anybody have experience seeing Dr. Kriwinski in Cleveland? If yes, what was your impression and how was the experience. Thanks.
  3. https://aspire.care/?fbclid=IwAR1YYP90jGH4uQ4734Sbp4F_KkPiDQXqPhCMaUDH8xYlfi7dYgITsCianIw This could be really helpful to people new to PANDAS. It's a well-done site and easy to navigate. Acronym stands for Alliance to Solve PANS and Immune-related Encephalopathies
  4. Are you doing anything anti-inflammatory? Try ibuprofen 3x a day for a week and see if it helps. Or try turmeric 2x a day. If she does even slightly better while inflammation is reduced, it's helpful to know, as it suggests something autoimmune is involved. Steroid tapers have helped my son several times. If you can convince a doc to prescribe them for a couple of weeks, that may be something worth pursuing. So sorry you are going through this. Sending virtual hugs.
  5. Thanks. I don't think we will have options with respect to where to get IVIG. I believe Dr. K still uses only one specific facility in the Chicago area.
  6. DS wants to to it. DH is on board to spend our savings to make it happen. I am the only one with reservations. DS will see his internist this May to get 2nd opinion (she knows Swedo and is very up-to-date on latest studies/articles). If internist agrees, we will have a call w/ Dr. K in Jan, then labs and another call w/Dr. K in March. Hypothetically, then IVIG in May 2020. Thanks.
  7. DS had his most significant flare from Dec 2010-April 2012 at ages 12-13. He had IVIG 2x in 2011 as part of 2nd NIH clinical trial. He seemed to have recovered very briefly after 2nd IVIG, but got strep 3 wks later and we lost him again for another year. Remission from that most significant exacerbation came about two months after a three-week steroid taper while on Augmentin 875 per Dr. B. He had his tonsils removed during senior year in HS per Dr. K phone consult - said we could not send him to college without removing them first. ENT found 33 different infections on tonsils during bio
  8. Our doc always said we would be okay to do 1.5x normal dose of ibuprofen 3x daily for a day or two, then reduce to normal dose 3x daily - like morning, right after school, and bedtime.
  9. What are you doing as far as anti-inflammatories go? Is he taking ibuprofen or turmeric or prednisone? The behaviors are based on the brain inflammation, so even though it doesn't solve the actual problem, reducing inflammation can help greatly with respect to controlling the symptoms
  10. My son ended up with a very long-term remission after a three week steroid taper (that was following two months on antibiotics). My son remained on antibiotics for an additional full year during/after the taper so the benefits lasted. It was sort of amazing. About two months AFTER he finished the steroid taper, the light switch simply turned back off. Went from full-blown OCD/anxiety to zero of either.
  11. When we attempted to get an appointment with Dr. Latimer, the assistant booked us an appointment 100 days out then instructed us to send a nonrefundable check for $1,000 to lock in the appointment. No idea if that's still the protocol.
  12. Carolyn Walsh MD in Leesburg VA - my son just turned 20 and she has been his internist/pandas 1st responder since he was 12.
  13. https://www.amazon.com/gp/product/B000FGZFRM/ref=oh_aui_detailpage_o03_s00?ie=UTF8&th=1 Solaray brand 300 mg 2x daily
  14. A long time ago, my son used ibuprofen 3x daily for about six months, but he was 12 years old at the time, not seven. We eventually discovered turmeric. He now takes a 600 mg capsule 2x daily and says it feels the same to him as 15 mg of prednisone in terms of the benefit. I am not sure how you administer that to a seven yr old, who may not be able to swallow pills. Am guessing you could open the capsule and mix the contents with applesauce or jelly (but not sure what that would taste like). Anyway, I definitely would try ibuprofen 3x a day for a month while figuring out what to do next a
  15. My DS only responds to bactrim to treat mycoplasma infections. He also needs 3 week steroid taper to eliminate the accompanying neuropsych symptoms, but I understand that you might be afraid to consider steroids right now. My son always takes a 600 mg turmeric capsule 2x daily to reduce brain inflammation. Is your son at least taking ibuprofen around the clock (like 3 pills every six awake hours)? Anything you can do to reduce the inflammation potentially could reduce the symptoms while you are figuring this out. Honestly, I would find any doc who is familiar with PANDAS and see how
  16. DS is a teen so he just takes the capsules
  17. For my DS, turmeric 2x daily works about the same as 15 mg prednisone - much better than ibuprofen
  18. DS had intermittent bouts of long qt intervals. Turned out to be tied to use of azithromycin (which, apparently, is not that uncommon). Once we permanently switched him away from that antibiotic, the issues resolved and have not returned in three years.
  19. For DS the food aversion and difficulty swallowing is directly related to brain inflammation. Years ago, we found that if he took ibuprofen 3x a day for a few days, he had much less trouble. Now he takes turmeric capsules twice daily which seems to make things much easier on the food front. Once in a while, he still gets an occasional challenge with eating. When that happens he takes 5 mg prednisone for a few days along with daily antibiotics and gets things right back in line. He still self-restricts and has a limited diet, but is doing much better than before he added the turmeric.
  20. My son takes 300 mg turmeric twice daily. He is a young adult and weighs 140 pounds. https://www.amazon.com/Solaray-Guaranteed-Potency-Turmeric-VCapsules/dp/B004OU177M/ref=sr_1_1_a_it?ie=UTF8&qid=1512402634&sr=8-1&keywords=turmeric%2Bsolaray&th=1 I suspect a very small amount either from your spice bottle or taken from a capsule and stirred into applesauce or used as seasoning on cooked food would be sufficient for a four year old child. DS did take ibuprofen 3x daily for a month, at one point, but he was 13 at the time. Now that you have gotten the inflammati
  21. FYI - My son had a three week steroid taper and completely normalized three weeks after the taper ended. He did take ibuprofen for a few months and turmeric ongoing to keep the inflammation down after he went off the steriods. Hope the improvements you have seen stay and that others come in time.
  22. The methylation process is the one that would be responsible for eliminating the build-up of excess unconverted B vitamins in his system. Since that is the process that hasn't been working effectively, it likely will take quite a while for things to normalize.
  23. My son is compound heterozygous. If you have mthfr gene mutations your body is less able to turn B12 and Folic acid into methyl-b12 and methylfolate (the form needed by the body). So one's B levels can be quite high in untreated mthfr gene mutations. The body has plenty of B vitamins, it just can't effectively convert and use them. Is your child now supplementing with methylb12 and methylfolate? My son supplements with the drops. You have to start very slowly and build up to a higher dose gradually. http://www.empirical-labs.com/vitamins-supplements/liposomal-b12-methylfol
  24. I am so sorry. DS's long-lasting remission came from a 3-week steroid taper coupled with augmentin 875 2x daily. At first, he got a bit worse, then remission came two months after the taper ended. He remains on antibiotics and turmeric. Would he be willing to try steroids? Clearly needs to reduce brain inflammation. Again, terribly sorry.
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