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PANDAS tx causing antibx resistant super bugs?


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I felt so inadequately prepared (understandably so) to reply to some of the things that the neuro said to me during our first meeting last week. I am SO happy that she is willing to treat if/when necessary, but still a lingering concern regarding something she said.

 

She pointed out that whereas she belives in PANDAS and will treat PANDAS....she is worried that with so many children being treated for it...could the overuse (whether necessary or not) of antibx used to treat it contribute to antibx resistant superbugs? I suppose it's possible - but what is our option? Has anyone else here been presented with that concern by a physician?

 

G

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I actually asked our neurologist if treating our son with long term abx could put him at risk for acquiring an infection that would be abx resistant. The response I got was that new antibiotics are created all the time just like my son's brain was being attacked all the time. The way it was said made me laugh and I took the script for the long term abx.

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I am particularly fond of Dr. Latimer's remark concerning over usage of antibiotics at the OCD conference this summer. She reminded us of all the teenagers all over the country being treated with antibiotics for acne. I just really thought that statement put things into perspective!! Sometimes I wonder if it was the overuse of antibiotics in the first place that hurt our kids, and made the bacteria so difficult to eradicate. And now they want to pull back, and watch our kids suffer!! So I like the idea that new antibiotics are being created all the time answer. This antibiotic train was started a long time ago, no jumping off now as far as I'm concerned! Keep making new ones!! That's what the drug companies get paid the big bucks for!!

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I am particularly fond of Dr. Latimer's remark concerning over usage of antibiotics at the OCD conference this summer. She reminded us of all the teenagers all over the country being treated with antibiotics for acne. I just really thought that statement put things into perspective!! Sometimes I wonder if it was the overuse of antibiotics in the first place that hurt our kids, and made the bacteria so difficult to eradicate. And now they want to pull back, and watch our kids suffer!! So I like the idea that new antibiotics are being created all the time answer. This antibiotic train was started a long time ago, no jumping off now as far as I'm concerned! Keep making new ones!! That's what the drug companies get paid the big bucks for!!

 

Never mind all the cows and chickens that are pumped full of antibiotics in the factory farms.

 

I also realize that keeping my PANDAS dd on prophylactic Azith. (to hopefully prevent re-occurance of anorexia, depression, debilitating OCD) will might her skin beautiful and acne free during her teenage years!! :lol:

Edited by EAMom
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Did the doctor have an opinion on the amount of antibiotics given to the animals we then eat or the stance on prophylactic antibiotics being used for things like Rheumatic Fever? Or how vaccines can cause resistance. I may be wrong but isn't that the case with Prevnar and why they had to add more into that cocktail?

Edited by Vickie
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My doc brought this up--he is concerned because my son is allergic to penicillin, and his strep doesn't tend to respond to azithro, so he is hesitant to keep him on ceph full time since we don't have that many choices left, and because my son is so young. we'll see what happens--he is getting strep so often that soon we will have to do something differently.

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The way I see it, THE SUPER BUGS ARE ALREADY HERE! So we have to hit them with all we've got.

In the last 30 days, I've been treated with Augmentin, Biaxin, and Cefuroxime... my doctor said, "if this doesn't work, you're screwed!" I love my doc, but did not like that remark! I know there are other things to do, but I don't think she's willing to go there. I'm making an appoinment with an infectious disease specialist just in case.

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The way I see it, THE SUPER BUGS ARE ALREADY HERE! So we have to hit them with all we've got.

In the last 30 days, I've been treated with Augmentin, Biaxin, and Cefuroxime... my doctor said, "if this doesn't work, you're screwed!" I love my doc, but did not like that remark! I know there are other things to do, but I don't think she's willing to go there. I'm making an appoinment with an infectious disease specialist just in case.

 

I think Peglem had luck with Rifampin combined with Augmentin...you might ask her. There's also Azith (done that one yet?) or Clindamycin. (Just throwing more options for your doc! B) )

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The way I see it, THE SUPER BUGS ARE ALREADY HERE! So we have to hit them with all we've got.

In the last 30 days, I've been treated with Augmentin, Biaxin, and Cefuroxime... my doctor said, "if this doesn't work, you're screwed!" I love my doc, but did not like that remark! I know there are other things to do, but I don't think she's willing to go there. I'm making an appoinment with an infectious disease specialist just in case.

 

I think Peglem had luck with Rifampin combined with Augmentin...you might ask her. There's also Azith (done that one yet?) or Clindamycin. (Just throwing more options for your doc! B) )

Well, actually, I think perhaps we are dealing with more than strep. What we are doing should have the strep all knocked out, but here we are in the middle of another exacerbation. So far, we've done the rifampin/augmentin 2X. Each time we got @ 3 months of good times, then exacerbation. So we're going to do another round...if we only get good for 3 months then I'm officially dxing my daughter w/ SOT.

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I read an article recently (ugh, can't remember where though) that said that the problem/concern is that antibiotics aren't being created as often as they were in the past.

 

The response I got was that new antibiotics are created all the time just like my son's brain was being attacked all the time.

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The way I see it, THE SUPER BUGS ARE ALREADY HERE! So we have to hit them with all we've got.

In the last 30 days, I've been treated with Augmentin, Biaxin, and Cefuroxime... my doctor said, "if this doesn't work, you're screwed!" I love my doc, but did not like that remark! I know there are other things to do, but I don't think she's willing to go there. I'm making an appoinment with an infectious disease specialist just in case.

 

I think Peglem had luck with Rifampin combined with Augmentin...you might ask her. There's also Azith (done that one yet?) or Clindamycin. (Just throwing more options for your doc! B) )

Thanks Eamom! I'll keep those in mind. Coincidentally, my son is doing great now that we are adding Azith M-W-F. I might try that for myself. I was just reading a very interesting article on Lyme treatment and it's fascinating because they explain how the different antibiotics work. I posted it over on the Lyme forum if anyone is interested.

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The way I see it, THE SUPER BUGS ARE ALREADY HERE! So we have to hit them with all we've got.

In the last 30 days, I've been treated with Augmentin, Biaxin, and Cefuroxime... my doctor said, "if this doesn't work, you're screwed!" I love my doc, but did not like that remark! I know there are other things to do, but I don't think she's willing to go there. I'm making an appoinment with an infectious disease specialist just in case.

 

I think Peglem had luck with Rifampin combined with Augmentin...you might ask her. There's also Azith (done that one yet?) or Clindamycin. (Just throwing more options for your doc! B) )

Well, actually, I think perhaps we are dealing with more than strep. What we are doing should have the strep all knocked out, but here we are in the middle of another exacerbation. So far, we've done the rifampin/augmentin 2X. Each time we got @ 3 months of good times, then exacerbation. So we're going to do another round...if we only get good for 3 months then I'm officially dxing my daughter w/ SOT.

What's SOT?

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The way I see it, THE SUPER BUGS ARE ALREADY HERE! So we have to hit them with all we've got.

In the last 30 days, I've been treated with Augmentin, Biaxin, and Cefuroxime... my doctor said, "if this doesn't work, you're screwed!" I love my doc, but did not like that remark! I know there are other things to do, but I don't think she's willing to go there. I'm making an appoinment with an infectious disease specialist just in case.

 

I think Peglem had luck with Rifampin combined with Augmentin...you might ask her. There's also Azith (done that one yet?) or Clindamycin. (Just throwing more options for your doc! B) )

Well, actually, I think perhaps we are dealing with more than strep. What we are doing should have the strep all knocked out, but here we are in the middle of another exacerbation. So far, we've done the rifampin/augmentin 2X. Each time we got @ 3 months of good times, then exacerbation. So we're going to do another round...if we only get good for 3 months then I'm officially dxing my daughter w/ SOT.

What's SOT?

http://www.latitudes.org/forums/index.php?showtopic=9430&st=0&p=79181&hl=toast&fromsearch=1entry79181

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What I find infuriating about this entire discussion is that if our kids had rheumatic fever - there would be very little question about long term abx treatments. But yet they're willing to put our kids - and their fragile, developing brains - on all sorts of damaging psych meds instead of treating (and preventing) the root cause of the problem - the antibody response to infection!!! So when I've been presented with that argument (which I was at the After Hours Pediatrics the other night) - I ask if they'd object to the treatment if it was RF? Of course the answer was no - but the NP still tried to convince me that our pediatrician, pediatric neurologist and Dr. Murphy were all wrong.

 

I understand the heart is really important, and you have to do what you can to protect it - but call me crazy - isn't the brain kinda important too?? It's not like we're putting our kids on long term abx to prevent them from losing the use of their pinky fingers. It's their BRAIN!!!

 

Sorry - got a little testy there, won't let it happen again. :D

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I fully agree. When I asked my son's old ped about antibiotics and RF, the response was "but antibiotics would be hard on his little tummy". Um....what about his brain????????? I think some docs still have that notion that the kids will outgrow PANDAS so they don't need to treat it agressively and the fact that articles are still being written on websites saying the "simple" thing to do with a PANDAS child is a round of antibiotics to kill the strep. I still see articles being written like that. "The remedy is simple enough, a round of antibiotics". It drives me crazy to read that!......Obviously, that mindset needs to change

 

 

What I find infuriating about this entire discussion is that if our kids had rheumatic fever - there would be very little question about long term abx treatments. But yet they're willing to put our kids - and their fragile, developing brains - on all sorts of damaging psych meds instead of treating (and preventing) the root cause of the problem - the antibody response to infection!!! So when I've been presented with that argument (which I was at the After Hours Pediatrics the other night) - I ask if they'd object to the treatment if it was RF? Of course the answer was no - but the NP still tried to convince me that our pediatrician, pediatric neurologist and Dr. Murphy were all wrong.

 

I understand the heart is really important, and you have to do what you can to protect it - but call me crazy - isn't the brain kinda important too?? It's not like we're putting our kids on long term abx to prevent them from losing the use of their pinky fingers. It's their BRAIN!!!

 

Sorry - got a little testy there, won't let it happen again. :D

Edited by Vickie
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