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bigmighty

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bigmighty last won the day on October 10 2017

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  1. bigmighty

    Need Help

    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.
  2. bigmighty

    Need Help

    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
  3. 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.
  4. bigmighty

    New here

    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.
  5. bigmighty

    New here

    Carolyn Walsh MD in Leesburg VA - my son just turned 20 and she has been his internist/pandas 1st responder since he was 12.
  6. bigmighty

    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
  7. bigmighty

    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.
  8. bigmighty

    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.
  9. bigmighty

    Ibuprofen alternative?

    DS is a teen so he just takes the capsules
  10. bigmighty

    Ibuprofen alternative?

    For my DS, turmeric 2x daily works about the same as 15 mg prednisone - much better than ibuprofen
  11. bigmighty

    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.
  12. bigmighty

    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.
  13. 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.
  14. 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.
  15. bigmighty

    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.
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