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NYCMom

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NYCMom last won the day on March 17

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About NYCMom

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    Gardening, taichi, karate, motorcycles, snowboarding
  1. Yes we found that the antibiotics helped with daily symptoms as well as flares. Our DS contracted Lyme (we figured it out because of a flare) and was successfully treated (we hope). He still flares occassionally and we've stopped trying to figure out the sources. There are just too many and the info wouldn't really make a difference in our approach unless there was an active infection to tackle. Instead we double down on probiotics and lecture about clean eating.
  2. This is great. I look forward to more of these polls/mini investigations. I think we have such a wealth of untapped info here. Thank you!
  3. Yes encopresis (uncotrolled bowel movements) is common in PANS kids. Our doc thought it had something to do with constipation and gave us laxitives for it.
  4. Short Poll for PANDAS/PANS Mothers

    As a former medical researcher I totally understand. Looking forward to the results and explanation, although you're going to need a lot more responses
  5. Short Poll for PANDAS/PANS Mothers

    Would love to know the purpose or hypothesis behind the poll?
  6. Two thoughts: 1. Some of us have kids that flare in the presence of infections in others. So there's not necessarily a need for an active infection in your child for them to exhibit pans symptoms. 2. Some kids also appear asymptomatic even though there is an active infection. You just might not know it. AND to make it worse, some kids do not even test positive for an active infection.
  7. Thermometer

    No, I haven't gotten that far. Just researching alternative therapies right now. I read "Stop the Thyroid Madness" and I've been altering my diet slowly, dropping goitrogens, taking ashwagandha, etc. I just bought a simple oral NES stick thermometer. I haven't testing it against anything else for accuracy but it seems to work fine.
  8. Thermometer

    I'm doing the same thing! I researched thermometers for accuracy and picked a digital one (NES brand), so sorry no alternate recommendations. However, here's a good thyroid/adrenal chart to use: http://www.drrind.com/therapies/metabolic-temperature-graph There are downloadable chart files in there somewhere.
  9. New Member - ABX working

    I can only share our situation, but I'm pretty sure we're not unusual. You can see our course of treatment in my signature. Our ds13 has been on and off abx for years. He is currently off and only has minor flares now, mostly tics and some mild adhd behaviour. We're pretty sure his flares are due to the canary in a coal mine reaction to others around him having bacterial OR viral infections. When he's ticcy I usually find out that one of his classmates has strep. It's mild enough that we have been choosing not to treat, rather than mess with his stomach. We stick to trying to keep his diet clean (low sugar, refined foods, gluten, etc.) and trying to keep him a daily regime of probiotics (klaire, kefir). That being said, he's a teenager now so his habits are somewhat out of our hands. We just keep talking to him about making good choices and taking care of himself. There are a lot of different scenarios on this board. Some kids can't handle even mild exposure and flare really strongly when off abx. You have to be a good observer and gage your kid.
  10. Probiotics with Abx

    Yum Yum Dophilius Klaire labs All kinds of Kefir
  11. Yes, very common. Immune system is distracted by an actual infection.
  12. I'm noticing a lot more postings of research articles and papers recently. I think this is a good sign that the medical community is starting to 'loosen up'. Here's one about narcolepsy but with lots of references to what we all talk about all the time on these boards... http://protomag.com/articles/betrayal-within
  13. Quite possible. Two things come to mind: 1. The idea has been bandied about here that abx also have an anti-inflammatory effect, similar to taking ibuprofen. 2. There is also the possibility that the abx are currently shielding her from some exposure to a bacteria or virus that will cause her to flare without actually contracting anything. I think this happens all the time to my kid, even when he's taking abx prophylactically.
  14. 23andme COMT V158M ++ (AA)

    Try starting with the Heartfixer website. It's been recommended many times in this forum.
  15. Our DS is 12yrs, diagnosed with PANDAS (PANS) at 6yrs. He was on prophyl abx until a couple of years ago. DS was doing great so Dr gave us the go ahead to stop whenever we felt comfortable, so we did. That year he contracted Lyme and had a bout of strep that put us right back on abx, which he is still on today. He's a pretty mild case, we've never done any other treatments other than some sporadic Omegas, probiotics, etc. and some limiting of gluten and sugar. He currently flares every once in a while, is at 95% most of the time and 100% occasionally.
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