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bigmighty

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  1. Ibuprofen question

    https://www.amazon.com/gp/product/B000FGZFRM/ref=oh_aui_detailpage_o03_s00?ie=UTF8&th=1 Solaray brand 300 mg 2x daily
  2. Ibuprofen question

    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 and not worry too much about the down-side.
  3. Help....when to be admitted?

    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 quickly you can get in to see that person. Ask if they can switch up the antibiotic and possibly do a closely-monitored steroid trial. I am so sorry.
  4. Ibuprofen alternative?

    DS is a teen so he just takes the capsules
  5. Ibuprofen alternative?

    For my DS, turmeric 2x daily works about the same as 15 mg prednisone - much better than ibuprofen
  6. Cardiac related issues....anyone?

    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.
  7. Help with food adversons

    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.
  8. 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 inflammation down, it is very important to keep it down for a while so any research you can do on natural antiinflammatories would be helpful.
  9. 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.
  10. MTHFR Mutations

    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.
  11. what is next best anti-inflammatory?

    DS takes soloray tumeric 2x daily
  12. MTHFR Mutations

    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-methylfolate/
  13. PANDAS teen with severe OCD

    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.
  14. 7 years of PANDAS

    I am so sorry. It sounds like you've already tried pretty much everything, but I have to ask - do anti-inflammatories help at all? My son was helped tremendously by steroid taper. Prior to that, he did much better on ibuprofen 3x daily. Presently, he takes turmeric capsules 2x daily and that seems to keep most of the symptoms at bay. I realize it's not a real solution to reduce inflammation rather than address the inciting problem. But I suspect you'd take anything you can get at this point. If you can get her to take ibuprofen either capsule liquid 3x daily for a few days or take the turmeric and see if she feels any better, maybe you all could get a small measure of relief. Again, I am just so incredibly sorry.
  15. PANS/CVID

    DS is in remission from the PANDAS, but still has a CVID along with IGA and IGM deficiencies. Those seem to be gradually worsening.
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