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Defence of long-term abx and abx resistance

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Does anyone have good talking points on why giving our kids long-term abx does not contribute to abx resistance? I have spoken to a few people outside the Pandas world and one of their first reactions is to agree with with yhe huge hesitation of doctors to give long-term antibiotics because of the danger of it contributing to an increase of infections resistant to abx.


Given the new public focus on Pandas because of the Boston situation and the loud calls of those posting on BCH's FB for giving the child the abx BCH withdrew, it would seem we would all benefit from having arguments at the ready as to why long-term abx for our kids does not promote abx resistance, or does so only in an extremely marginal way.


Here are things I can think of:


1) Pandas/Pans is a rare disease, so the number of kids we are talking about is very small in the scheme of the greater community.


2) Even within the Pandas/Pans realm, a majority of kids will be helped by fairly short-term abx and will not need long-term abx (true?) so we are speaking about an even smaller subset within this rare disease.


3) Pandas/Pans is related to two other rare diseases, Rheumatic Fever and Sydenham's, where the long accepted medical practice is not just to treat with abx, but also to put them on prophylactic abx until they are 21.


Is there any argument from the treatrment side that not fully treated the infection with abx actually promotes the development of abx resistant infections? That would be very helpful if one could make it.


Any other or better arguments would be most welcome.



Ko's Mom

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Just thought it would be worth mentioning since this came as something of a surprise to me when I first heard it this past summer during a panel with Swedo, Dr. M., and Dr. L. at the IOCDF conference . . . .


Apparently, the real concern with long-term use of abx is not "resistance." It's c difficile.


In our case, the other issue would be as follows. Rheumatic fever patients are, as I understand it, prescribed prophylactic doses of abx to the age of 18 or so, in the interest of protecting their heart. So I'm not sure prophylactic doses are at issue, at least not with PANDAS/PANS-savvy docs.


But the reality of it is that in some cases . . . Sammy Maloney, my DS and at least 2 other PANDAS/PANS kids that I know of directly . . . it took long-term (2 years), treatment dose abx to effectively push the worst of PANDAS/PANS behaviors aside. To my knowledge, nobody is/has really studied this, and references to such long-term use are generally treated as strictly anectdotal. Also at the IOCDF, Swedo allowed that she would now support 3 to 4 weeks of treatment dose abx for PANDAS/PANS cases based on parental reporting, but she does not feel that longer use of treatment dose is appropriate given the c difficile risks.


So, what, if anything, could set aside the c difficile concerns? Making probiotic "prescriptions" as important as abx prescriptions? :blink:

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I am sure you are right that c. difficile is the bigger risk for our kids taking long-term abx. Unfortunately, the nonPandas public (including friends I've spoken to) are not focused on risk to our kids, but rather risks to the broader community arising from our kids taking long-term abx that could contribute to abx resistant infections among others. What I'd like is a good convincing response that our kids' treatment for Pandas is not putting the community at risk by contributing o abx resistance.


Would love to hear from anyone with a good response!


By the way--I thought Swedo said abx for 3 to 6 weeks--not 3 o 4. I went back to the conference notes that I thought had this, but find no mention one way or the other. I like 6 better than 4!

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I would just explain that this course of treatments is for a very specific and somewhat rare condition for your child. The flip side of that is if your child is taken off the medication, their quality of life will go down hill. Explain that the antibiotics are to "cover" your child from getting strep in the future. They assist their immune systems because their immune systems are deficient.


I have a sister in law with COPD that is taking long terms antibiotics to ward off infection. As soon as she goes off antibiotics she gets sick and ends up in ICU. She has coded twice and been brought back by some wonderful doctors and nurses. Would your "green" friend insist that she be taken off long term antibiotics so that "possible" antibiotic resistance not happen?


I do not have any patience for people like your friend. They are basically questioning an M.D.'s knowledge of the situation and even yours as a parent. Stand strong for what you know is right.



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If it were me, I would ask your friend if they believe that the standard of treatment for RF, of keeping a child on abx until they are 18 or older so as to protect their heart, is a reasonable use of abx. If the answer is yes, then I would say, surely, protecting a child's brain is as important as protecting their heart.


If your friend disagrees with RF treatment, too, then I would point out that we do many necessary things to meet the needs of society now or its individuals that may have negative ramifications for the future but still have to be done.


Heck, basically, living as an organism well out of it's ecological niche is fairly knobbling most of the stuff round us (yup, I'm a hippy too) but you gotta make some decisions that hopefully balance now needs and future needs. It's a whole academic departmentful of ethics arguments but what would he or she do if it was her/his child that were at risk?


Perhaps, the real root of the argument for your friend, unless they are a real 'walk the talk Jainist type' (for whom I do have much respect, actually, but can't do myself), is the psych/medical schism that says that abx make sense for a bodily need but not a mental health need.

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Good thoughts. I have very much wondered why doctors are so protective of the heart for RF (and for Syndenham's too) but not of the brain for PNADAS/PANS. I understand that without a heart that doesn't function correctly one could die, but without a brain that doesn't function properly one life is greatly short-changed.

Ko's Mom

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Teens are placed on long term abx for acne all the time, both systemic and topical abx.


Hasn't Dr. T posted somewhere that "resistance" is only an issue of misuse when an entire community is placed on the same abx and overly so as in for viruses, ect. just to make patients happy. Maybe he said that on the radio show?

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I think he did--I definitely remember him hitting briefly the question of abx resistance. I do think this is an important question for us--doctors have been very trained to limit abx use and I do think it's part of the pushback many of us get from them. I couldn't get appropriate abx for DD with titers of 650 because she was just finishing up a course of abx for pneumonia. The doctor insisted that would take of the strep, never mind that the abx (Avelox) does nothing for strep.

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heres what wikapedia has to say:



and I read a book on it a while back. just go to amazon and search on "antibiotic resistance", I read the most basic I could find, as I was (am) more interested in how resistance may develop and affect and individual (my son) than protecting an entire community.


you can get a ton of scholarly articles by googling it as well.


Its also an argument of what is pans - is it auto immune, or is it an active infection - and - what is the mechanism in the antibiotic that is working. Many antibiotics have other properties - like azithromycin for example. It was originally developed to be an anti-inflammatory. Perhaps it is the anti-inflamatroy property that we see as effecting our kids. Also, some kids may have active/chronic/or recurrent infections...some may not. And antibiotics also have immune modulating properties (beyond killing off bacteria) that is not fully understood. There are people studying it...


I don't think this is helpful in making any arguments, but may help in understanding what the arguements for not prescribing them may be. I believe that immune deficiency is another reason that antibitoics are routinely prescribed - either CVID or PID. I heard talk of this ar a recent Immune Defeciency Foundation patient meeting.


BTW - what I learned in reading my book was the a low does is what you want to avoid to avoid resistance being created in an individual. So, for me, I stopped the "prophylactic does" and moved to full strength. (via our LLMD - who are not afraid to give scripts if there is any evidence.. at all... of any...possible infection... of any kind)

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