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ThinkGut - curious about how probiotics and/or gut bacteria help your own children with their Pandas issues. This is obviously a passion for you, seemingly to the exclusion of other treatments. I assume that you practice what you preach in terms of exposing your kids to good germs and healthy diet and yet this doesn't seem to have protected them from Pandas. Can you share what else you do treatment wise and how your children have done with these treatments?

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I came to the hygiene hypothesis/importance of exposure to certain microbes until well after PANDAS. (Interesting assumption, though.) I discovered the fact that insufficient exposure to certain microbes is critical for proper immune function after it was too late. Remember, the window for exposure is in utero or first year of life.

 

Anyway, we seem to be managing (so far, knock wood) with probiotics/prebiotics alone. No antibiotics, IVIG, coQ10, etc., yet. Although, I'm glad to know they're there if/when required. Probiotics are not sufficient to cure but they may be sufficient to prevent.

Edited by ThinkGutBacteria
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I came to the hygiene hypothesis/importance of exposure to certain microbes until well after PANDAS. (Interesting assumption, though.) I discovered the fact that insufficient exposure to certain microbes is critical for proper immune function after it was too late. Remember, the window for exposure is in utero or first year of life.

 

Anyway, we seem to be managing (so far, knock wood) with probiotics/prebiotics alone. No antibiotics, IVIG, coQ10, etc., yet. Although, I'm glad to know they're there if/when required. Probiotics are not sufficient to cure but they may be sufficient to prevent.

 

Wow this is fascinating and completely different then everything I have ever read published, doctors I have spoke to or heard from thousands of PANDAS parents, can you please provide more information on your children's history,initial presentation, ages, symptoms etc? How was PANDAS disgnosed in the absence of infection? Could you PM me you contact info? I'd love to reach out to Dr. Swedo so she can contact you, I am sure study of this medical anaomoly on how your children have been miraculously cured could help all of us so much!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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I would also like to hear more of your personal story if you're willing to share. It does seem unique. But you have left much unsaid and I don't want to make any more interesting assumptions.

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A 6-minute lecture on anxiety, appetite, and other familiar behaviors that can be explained by gut bacteria. They've corrected the communication deficit in autism by adding the bacterium, Bacteroides fragilis.

Thank you for posting. I have been keeping an eye on this as well:

http://atguelph.uoguelph.ca/2012/07/gut-bacteria-may-hold-key-to-autism/

and as we do not live far from Guelph, think this may be an interesting concept to follow up on.

 

I am at a loss at the moment however. DD11 follows a fairly strict intense nutrition diet (paleo/Terry Wahls type)with 50 billion probiotic cultures/day from multi-strain supplements. We use lacto fermented vegetables several times a week. Many of the probiotics you mention are not available as supplements, and have pathogenic potential. If you could please share some information on the probiotics/prebiotics you use to successfully prevent PANS symptoms, I know many of us would be interested.

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Hi - I'm sure ThinkGut doesn't need anyone rushing to the defense :) but just because other treatments work to help alleviate PANDAS symptoms or even if we (or the big name docs for that matter) feel that the etiology has been nailed down, and it hasn't, doesn't mean that gut bacteria couldn't be at the base for all this.

 

Some kids get strep with no problem... what makes our kids different? Why is infection so disabling for them. Who's to say that the immune issues wouldn't have ever been there had these kids' GI tracts been working optimally. Methylation can be part of the problem for some, same as zinc/copper etc etc etc but perhaps gut is as big or bigger part of this for our children.

 

Our childrens' guts are under a bigger assault now than at any time. GMOs, abx, modern wheat, lowered consumption of fermented foods, loss of contact with soil.

 

Is ThinkGut offering the complete answer, probably not, but neither are our drs, even the experts. If they were we wouldn't all be here reading the forum so avidly. If they are experiencing good control of symptoms with these interventions alone.. good for them. Gut health is the basis for my kids treatment and while we still have flares and still treat with infrequent abx and ibuprofen, I do wonder if they'd never had abx (IV during c-section and beyond,) eaten gmos (90% of processed food) and had a more natural diet would we be dealing with this or would they be able to better deal with what their genes and life throw at them?

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Rowingmom- have you looked at gmos in the diet at all?

 

I hadn't realised until last year just how much was there was out there and just how, potentially, bad it could be for the gut. Bt corn in particular seems to pose a unique threat to gut integrity. It's a super polarised debate but we are trying our best to get it out of the kids diets which is not easy, especially with corn byproducts being in so much stuff but we think we see a difference when we get good compliance.

 

The worry, if you buy into the anti-gmo argument, is that it isn't an issue of lowering amounts but, rather, total avoidance because of gene insertion into the bacteria in your own gut. So you could maybe go gmo free for 2 months but eat a gmo corn chip and have issues.

 

We're hoping that at least partial avoidance will help 'cos we just don't seem to be able to do total. I watched "The World According to Monsanto" (free on Netflix) and coulen't get off my soapbox for weeks. Obviously, still can't :)

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Dut,

Please don't misunderstand - I think gut health is enormously important and should play a significant role in a treatment plan. I'm sorry if it comes across otherwise. It's just that I don't have a good understanding of this particular situation and how probiotics alone have put Pandas into remission - if it has. Or is it that this family is just "putting up" with symptoms without doing the interventions most of us resort to. It's just been hard for me to put this information into context. For my own situation, pre and probiotics have never been enough to put the wild animal back into the cage.

 

In the past, when I've asked TGB about his own experiences, he's been vague and while certainly no one owes me any personal revelations, it makes me uncomfortable sharing personal information with someone who hasn't been willing to reciprocate. I don't know how to take the information about microbes without knowing how it's helped his children.

 

My intent was not to make others uncomfortable. Only to alleviate my own discomfort in not knowing anything about someone I'm having a conversation with. Most of us are more wordy when it comes to explaining our own situations. I truly believe in the importance of gut health. Just not to the exclusion of other things. But I apologize to all if my tone or line of questioning seems out of line.

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LLM - my turn to apologise if you thought that you made me uncomfortable because you didn't :) Questioning back and forth is what makes this forum so great. A good heated debate helps us all.

 

I more took issue with some of the other posts and what felt like an unnecessary level of sarcasm. I haven't read all of ThinkGut's posts so maybe I missed something but from the ones I have read, they haven't been 'personal' in any way. I've been there, soapboxing with some new info, sometimes not always the most sensitively, as I get caught up in my own excitement but I have always been able to do so without feeling personally attacked.

 

I would hate to feel as though I, or anyone else, couldn't proselytize from time to time and it be taken in the spirit in which it is being offered and yes, questioned and knocked down even but just not so personally.

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Rowingmom- have you looked at gmos in the diet at all?

 

I hadn't realised until last year just how much was there was out there and just how, potentially, bad it could be for the gut. Bt corn in particular seems to pose a unique threat to gut integrity. It's a super polarised debate but we are trying our best to get it out of the kids diets which is not easy, especially with corn byproducts being in so much stuff but we think we see a difference when we get good compliance.

 

The worry, if you buy into the anti-gmo argument, is that it isn't an issue of lowering amounts but, rather, total avoidance because of gene insertion into the bacteria in your own gut. So you could maybe go gmo free for 2 months but eat a gmo corn chip and have issues.

 

We're hoping that at least partial avoidance will help 'cos we just don't seem to be able to do total. I watched "The World According to Monsanto" (free on Netflix) and coulen't get off my soapbox for weeks. Obviously, still can't :)

We follow a paleo type diet which, by definition, eliminates grains (including corn), legumes (including soy), and processed seed oils. Heavy on organic greens, root vegetables for carbohydrates, cruciferous vegetables, and as much grassfed meat and ghee, wild salmon/seafood, organic eggs (minus the whites for DD11) as we can afford. Conventional meat should be out because it is likely fed GMO corn, but we sometimes do have chicken breast. I really can't do better than this and keep my sanity.

We all probably have GMO genes inserted in our gut bacteria. Will eating non-GMO remedy this? I'm thinking not, if this damage has already been done.

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Love the TED talk - thanks for posting.

 

Saw a presentation by Mady Honing last year on Autism. She had different theory - was testing it in mice. She was able to give mice "autism" by exposing them to a virus (it was a basic virus - like the common cold ) at a very specific point (like between day 8 and 13) in gestation. But the kicker was - if the virus was treated - with simple antiinflamatories - the baby mice were not autistic.

 

There are so many factors to consider. I'm not sure we'll ever have an answer to why, but hope that we can find treatment, and perhaps some ways to prevent it.

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First this is not the TED talk. It couldn't be. there is nothing new or specific about it.

Second, yes, microbes are a part of the PANDAS picture but what kind no one really knows. One can try and see on their kids what works. ABx help in that they kill many of them and you can start rebuilding the stomach flora with probiotics (and by kissing pigs, apparently).

Third, it will be very hard for pharmaceutical companies to come up with "good" microbes that will not harm some.

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