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This is disappointing . . . .


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I respect Dr Mercola and I do think antibiotics should be administered thoughtfully. However, the study references infancy - and specifically the first 20 days of life (implying a health benefit of breast feeding). Most of our kids are school aged. The other thing that isn't addressed in this article is the recent finding that there are at least three "types" of guts http://www.nytimes.com/2011/04/21/science/21gut.html, suggesting a predisposition to an ecosystem.

 

I think the importance of gut to overall health can't be overemphasized. But I have to agree with Nancy and Vickie - one the scales of abx risk and neuropsych trauma, I come down on the side of abx risks. I do hope to get to a point where we can leave them behind, but we're not there yet. And I'm pretty sure Dr Mercola would have no problem supporting the use of long term abx to battle childhood lyme disease, which he used to do when he was in practice.

 

LaurenK - I don't think any issue is black and white and I respect your reservations. I once had them too. But having lived on the other side of the tracks for far too long, I fear the return of pyschosis far more than antibiotics. It is also worth noting that some researchers looking into methylation question whether the switch on a gene can only be flipped on or off once in a lifetime. There are no answers to that question yet, but many things we give our kids have the potential to alter their gene expression.

 

Did you know that high fructose corn syrup may contain mercury, depending on where/how one of the ingredients is manufactured? http://www.washingtonpost.com/wp-dyn/content/article/2009/01/26/AR2009012601831.html

 

Our kids are exposed to dangerous things every day. For me, the damage Pandas/lyme did to my family and my son's cognitive development was far greater than a potential risk of antibiotics. But I do respect your concerns and appreciate the article as a reminder to keep pushing for overall health so one day we can get off the abx.

Edited by LLM
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Thanks for adding some perspective, LLM.

 

So, LaurenK, I will join in what LLM has said and express that I understand your concern regarding antibiotic use and fully support your right to make the best decisions you feel you can based on your knowledge and experience.

 

Really, what I'm commenting upon and have an issue with is a highly-regarded and oft-referenced institution such as the NIMH continuing to issue blanket statements such as these when they, arguably more so than any other health entity, know the battles we PANDAS families engage in to get our children effective treatment. It is an unwise, broad-brush, potentially damaging position that even they, as noted by bigmighty, go against in specific circumstances (the IVIG trial). So the least that might be said might be something less black-and-white, more nuanced, allowing for the possibility in which circumstances do, in fact, call for longer-term or prophylactic abx.

 

Again, the issue here is that standard practitioners from whom we seek treatment will turn to the NIMH's position on such things and be influenced, without having access to or knowledge of the more detailed stories and studies. In the end, I'm after a higher standard of care on the part of the NIMH and its representatives when it comes to issuing statements to the press on these topics.

Edited by MomWithOCDSon
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Perhaps I'm too jaded after all this time. Screams of politics and pharmaceutical lobbying to me. It is ironic and two faced that they'd print this yet fund research studies by Swedo and Murphy that suggest abx can be successful in treating neuropsych issues in the right sub-set of kids.

 

Guess you've just identified a goal for 2012 - wouldn't it be great for Vickie's '12 end of year video to flash "NIMH supports antibiotic treatment for PANDAS" ? Seems there's still work to be done.

 

And..."NIH finally changes their website!" :)

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Huh? We just finished the NIH IVIG clinical trial. They recommended remaining on antibiotics until age 18 - possibly 21. They also strongly cautioned against SSRI medications.

 

 

Did they give evidence as to why on either count???

 

Antibiotics were prophylactic (allegedly - DS isn't the only participant in the study who got strep again while taking them). SSRI - main issue was small increased likelihood of suicide in teens. Also, although it was not said, I suspect that they wanted to see if any recession of symptoms was expressly due to IVIG, not other causes.

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