bigmighty
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Posts posted by bigmighty
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Listen to show # 002 to hear an interview w/Dr. Swedo - it's 30 min. She mentions new family DNA research, but I can't find anything about clinical trials online. Would love to volunteer.
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This article is about the Even hotel in Rockville, MD. But their other hotel is in Norwalk, CT. Thought some might be interested.
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There are generics for florastor that are much less expensive. Also, best price for florastor brand is probably costco website - if it is good for you and you plan to continue taking long-term - can get expensive
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Double yay!
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Oh my goodness. Sorry you are on this journey, but glad you have some hard evidence as to the cause. What antibiotic were you given?
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Just because a doc claims not to believe, does not mean he/she cannot be convinced. I would ask the same neuro to run labs and also see if that doc is willing to give your DS 14 days of antibiotics if anything seems amiss. At least call and ask. The worst that can happen is that the doc says "no." Ask on this board with respect to what labs to request.
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"I've always been a little OCD about this stuff."
"Really? Some OCD is actually the result of an underlying autoimmune disorder. You might want to look into that." Said dead seriously. Then smirk if this is someone who should have known better
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I believe they only do heredity/ancestry testing at this time.
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Yes - except when he gets strep (three times in the past six months). Each time he has been on antibiotics for 10 days and once he was subsequently on steroids for 10 days. By and large, he has been in remission for 2 1/2 years.
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Steroids are what finally pushed DS into a lasting remission. He was age 13 and 85 lbs at the time and started with 35 mg for two days, then reduce to 30, etc. for a total of 21 days on steroids.
In DS's case, it was clear that there was residual inflammation. We could tell because his behavior on ibuprofen 3x daily was markedly better and calmer with less OCD than without the ibu. So we knew anti-inflammatories might help. You might want to try liquid advil - proper dose for her age/weight - 3x daily for a few days and see if you see a difference. If yes, steroids may be worth considering.
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LLM's comments were true for me. My B12 and folate were on the highest end of normal range. But it turned out I was compound heterzygous for two MTHFR gene mutations. So I had plently of B12 and Folate, but was unable to convert them to methyl-B12 and methyl-folate. So they were there but just went unused. After I started supplementing, my next labs showed my B-12 and Folate on the low end of the normal range - because my body was finally able to eliminate what it could not convert (because it DID have the methyl versions via supplements).
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DS 16 is in remission at present. During the 16 1/2 mo of his most severe exacerbation, he went from king of kindness to arrogant and bossy with a strong desire to compete/win at everything. When the remission occurred, the real DS returned in full. Your DS is still in there.
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Thanks for sharing the great news! Very hopeful that it continues.
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If he ever comes up with enough seed $ to produce some, he plans to donate them to the Children's Inn at NIH for the volunteers to hand out to the patients and their siblings.
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DS entered and won a national contest a while back. The "invention" (if you can call it that) was inspired by his participation in the NIH clinical trial. Thought some of you might get a kick out of the video for his submission:
- Missmom, philamom and MomWithOCDSon
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No. Had a serious allergic reaction to curcumin and also one to turmeric, at which point we sort of gave up on supplements. So olive leaf extract is sort of a natural antibiotic that might diminish the strep's ability to take hold?
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DS 15 has been (mostly) off of antibiotics for four months and doing well. That being said, we notice that PANDAS symptoms slowly reemerge every so often (yes - usually coinciding with when someone we know has strep). Dilated pupils, talking too loud, standing too close, talking baby talk, general disinterest in interacting with people, becoming more rigid with respect to how tasks are accomplished, etc. Ibuprofen causes them to recede for a few hours then return. Ignore them for a couple of days and they get progressively worse - restricted food intake, etc. Throw three days of omnicef or augmentin at him and he's right back to doing well with no symptoms again for another month or so. Lately, I find that I'm always scrutinizing every little behavior or mannerism to see if it is the start of a downward spiral, making little notes to myself to see if a trend is beginning to emerge so we can start the antibiotics (and steroids if necessary) again.
I would love for DS just to be "off of antibiotics." But in four months since he quit taking them daily, he has needed to go back on them for a few days three times already. Anyone have an opinion as to whether him taking antibiotics one day a week might be worthwhile in terms of preventing these blips? What do you all think? Is it best to just watch the symptoms reemerge (again and again and again) and treat each time things continue to decline? Or would it be worth trying one weekly (or maybe monthly?) dose of prophylactic antibiotics? The ups and downs are killing us here....
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It took 16 1/2 months to get DS back to functional. Now he has been in a good place (with only a few setbacks) for two whole years. It is a struggle, but all of your efforts will pay off. Sorry it is not instantaneous and that there is so much trial and error involved. But there is a wealth of information available to you. Just keep gathering information and trying things that make the most sense for your situation. Eventually, you will hit on the right specialists and best recipe for success for your DD's situation. Sending virtual hugs. Hang in there.
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Apparently, there's a company that puts the oil in gum and lozenges - http://mastixmedica.com/all-products-made-in-the-u-s-a/
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Sorry to hijack this thread, but this is interesting to me. I had a different blood clotting disorder (HELLP Syndrome). DS and I both nearly died in the hospital and I was advised not to attempt having more children. I have always wondered if there was a PANDAS connection somehow.
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https://www.coursera.org/course/neurobio
Free 10 week class starts in late April - Understanding the Brain: The Neurobiology of Everyday Life
Interview w/Dr. Swedo
in PANS / PANDAS (Lyme included)
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She briefly hit on the idea of having monthly throat cultures just to stay a step ahead, once a child is in remission. Seems especially helpful for kids going off to college.