Why are long term antibiotics safe?

[bronxmom2]

Hey,

I apologize in advance for the dumb question.

 

I'm meeting my pediatrician tomorrow, and I'm bracing myself for a fight because in the 2 months since I saw him, I switched my son from the prophyaltic amoxicillin he prescribed back to the Cefdinir that works-- in the meantime I've managed to get other dr.s to prescribe Cefdinir because he had a T&A and saw several drs. in relation to that.

 

But this is my main pediatrician; he is a good guy and I'm really hoping he can be our partner in fighting the PANDA

 

The pediatrician says the Cefdinir is dangerous taken for more than a month or so because it is "too global." I'm afraid he'll be mad at me for switching-- though it was ABSOLUTELY NECESSARY-- and, if not mad, won't prescribe any more-- forcing me to go out hunting for a doctor who will. I have only a week of the Cefdinir left.

 

I know many people here assert that the long-term abs, even the Cefdinir or azithromycin, represent no real health risk. I choose to believe you, but I don't quite understand why that is so. Can someone please explain in simple terms why these long-term global antibiotics are safe? Why does the dr. insist they are not?

 

I'd like to be able to argue my case.

 

Because I KNOW that if I allow him to go off the Cefdinir, it's all going to come back, and the T&A will have been in vain.

 

Thanks!

[lss]

Hey,

I apologize in advance for the dumb question.

 

I'm meeting my pediatrician tomorrow, and I'm bracing myself for a fight because in the 2 months since I saw him, I switched my son from the prophyaltic amoxicillin he prescribed back to the Cefdinir that works-- in the meantime I've managed to get other dr.s to prescribe Cefdinir because he had a T&A and saw several drs. in relation to that.

 

But this is my main pediatrician; he is a good guy and I'm really hoping he can be our partner in fighting the PANDA

 

The pediatrician says the Cefdinir is dangerous taken for more than a month or so because it is "too global." I'm afraid he'll be mad at me for switching-- though it was ABSOLUTELY NECESSARY-- and, if not mad, won't prescribe any more-- forcing me to go out hunting for a doctor who will. I have only a week of the Cefdinir left.

 

I know many people here assert that the long-term abs, even the Cefdinir or azithromycin, represent no real health risk. I choose to believe you, but I don't quite understand why that is so. Can someone please explain in simple terms why these long-term global antibiotics are safe? Why does the dr. insist they are not?

 

I'd like to be able to argue my case.

 

Because I KNOW that if I allow him to go off the Cefdinir, it's all going to come back, and the T&A will have been in vain.

 

Thanks!

[kim]

bronxmom2,

 

I think this is the concern of your dr.

 

http://www.druglib.com/druginfo/omnicef/wa...gs_precautions/

 

As with other broad-spectrum antibiotics, prolonged treatment may result in the possible emergence and overgrowth of resistant organisms. Careful observation of the patient is essential. If superinfection occurs during therapy, appropriate alternative therapy should be administered.

 

Cefdinir, as with other broad-spectrum antimicrobials (antibiotics), should be prescribed with caution in individuals with a history of colitis

 

 

Cefdinir is a third generation cephalosporin. Has your daughter ever used Keflex? Keflex is a first generation cephalosprin anitbiotic. Maybe your Dr would feel more comfortable with it's use longer term? Remember, if your daughter was to develope some superinfection, it would be up to your Dr. to defend his decision regarding the long term use of this antibiotic.

 

I don't think anyone is saying that ANY anti biotic use is perfectly safe with zero potential for unwanted side effects (disrupted gut flora, colonization with other bacteria, the bodies ability to metabolise it long term, etc.) it's the risk/reward ratio that has to be looked at carefully. If you want to argue it's use, you will have to become the expert! If he thinks you are truly informed, he will be more apt to take insights now and in the future, more into consideration. Don't take anyone's word for anything (including mine!). When an unexpected consequence pops up (especially when you are going against a Dr.s advice) I would imagine, it's not any fun. You have to know both sides of the issue very well and know that you educated yourself enough to stand by the consequences of that decision, no matter what. BTW, that was NOT a dumb question at all. Good luck today, and please let us know how it goes!

[EAMom]

I think Kim's idea of trying Keflex is a good one.

 

If your doc gives you a hard time, even on this, I would search out a specialist (immunologist? perhaps rhuematologist) who is somewhat PANDAS knowledgeable. In my experience, immunologists/rheumatologists are more comfortable with the idea of long term abs. The immunologist we just saw was entirely confortable with keeping our dd (currently 55 #) on 250mg/day Azith. for years.

 

Our pediatrician as also initially very "head shy" about long term abs. Her comment was "they only do that for rheumatic fever". When we got a pediatric neurologist (be careful...a lot of neurologists don't believe in PANDAS...we were able to convince ours though) and a pediatric rheumatologist to confirm that prophylactic abs were appropriate, she had to give in.

 

Here is a study where kids with cystic fibrosis were on Azith. long term (6mo.) and no problems were found. http://www.ncbi.nlm.nih.gov/pubmed/1238366...0,f1000m,isrctn Certainly, I would almost have a bit more concern about Azith. long term (vs. Keflex) b/c Azith. is immune- modulating. While the immune-modulation is very good for PANDAS kids, we don't really know the effect of keeping them on Azith for years on end....but certainly if needed to control PANDAS it is likely the lesser of 2 evils until IVIG can be done or at least symptoms are "under control" and then you could make a decision about switching to another ab.

 

I can't really say that Azith. or Keflex or any antibiotic poses no health risk...but for PANDAS kids longterm abs are the lesser of 2 evils. PANDAS is not a benign disease (concern about long term brain damage/baseline change as well as stress to family, interuption of normal childhood development, school function, etc) and I feel that the benefit of continuing abs far outweighs the risks.

 

I should also note (when asked) then immunologist felt that peds go overboard in their under use of antibiotics. They were taught not to overuse them and they have gone to the other extreme.

[T_Mom]

BronxMom,

How did the appt. go? Perhaps you could request for one month at a time-- We actually tried therapeutic strength antibiotics for our daughter for one month (at first) and the change was so evident that we then requested to continue. (I had thought one month would be it--) If it makes a significant different for your child then you have information to decide with as to the next steps.

 

Take care--

[T_Mom]

oops, sorry--I just reread your post. My note may not apply afterall.

How did your appt. go anyway?

Take care-

[bronxmom2]

Ugh, that went just the way I'd feared. He would not give me more Cefdinir and, now that the chronically infected, cryptic tonsils are out (source of the strep, as he says) he wants to see what happens if we stop the antibiotics or at most resume the prophylactic amoxicillin.

 

I explained that the amoxicillin hadn't worked in the past against his strep and that my understanding was that many PANDAS kids have strep that is resistant to Amoxicillin. He said this was not true-- no strep is resistant to any penicillin-- but the reason the Amoxicillin hadn't worked before was that it hadn't reached the strep harbored in the cryptic tonsils, which the Cefdinir was better at reaching. Now that the tonsils/adenoids are out, any strep he is exposed to should be "surface" and the amoxicillin will work fine.

 

All I could do was kind of stare at him and say, "but... but... the families on the message board say..." And you can imagine how that was received.

 

I mean, what he is saying makes sense on some level-- I want to be optimistic that the T&A will help-- but I am terrified of watching my son disappear again and having to fight to get him back.

 

When I expressed concern that my son suffers BRAIN DAMAGE every time this thing is allowed to flare, he said there is no evidence of permanent brain damage, and when the PANDAS symptoms disappear it's gone completely.

 

He also asserted emphatically that IVIG might work temporarily, but the benefits of IVIG are, by definition, always temporary.

 

When I tried to tell him about Dr. K and the families who claim that IVIG was a permanent solution that has saved their lives, he compared Dr. K. (though it was nothing personal, he knows nothing about the guy personally) with a snakeoil salesman and said he felt quite certain that the man was getting very rich on this.

 

So I have one more week of Cefdinir, than I have to switch to prophylactic amoxicillin. Should I try to find a new pediatrician by next Friday? I know that if I try the amox, and his symptoms do indeed come back, I will have proven my point... but I am so nervous about taking this risK!

[EAMom]

I do find it dissapointing that your doc would discount IVIG and Dr. K without researching them first.

 

You shouldn't have to be the one to teach your doc this but....here are the 2 main reasons (intracellular strep and coaggregation) why amoxcillin often fails in strep throat (not to discount his "now your son's tonsils are out so he should be fine theory"). My hope is that your son has had enough Cefdinir to erradicate his strep, and maybe he will do okay on amoxicillin to prevent future strep:

 

The following is from this article http://www.entrepreneur.com/tradejournals/.../169459644.html :

 

I think the answer lies in considering mechanisms of "resistance" beyond those involving a particular bacterium resisting a particular drug in a test tube. There are two newly appreciated phenomena that I categorize as "in vivo resistance" because they result from a fundamental interaction with the host and can't be measured by a lab test.

 

phenomena #1 (strep can hide intracellular where amoxicillin can't reach)....

 

1) Then, just last year, Dr. Edward L. Kaplan of the University of Minnesota and his associates showed for the first time that internalization was a likely explanation for the treatment failure of penicillin and amoxicillin, which are incapable of penetrating the cell wall. In contrast, erythromycin and azithromycin, which enter cells easily, were the most effective at GAS eradication while the first-generation cephalosporin cephalothin and clindamycin had intermediate efficacy (Clin. Infect. Dis. 2006;43:1398-406).

 

and phenomena #2 (the problem of "coaggregation...other bacteria can render amoxicillin ineffective against strep)...

 

A second mechanism of in vivo resistance, known as "coaggregation," was first described in 2004 by Dr. Eric R. LaFontaine and his associates at the University of Toledo (Ohio). They found that the pathogens Streptococcus pyogenes and Moraxella catarrhalis colonize overlapping regions of the human nasopharynx, and that M. catarrhalis can dramatically increase the adherence of S. pyogenes to human epithelial cells (Infect. Immun. 2004;72:6689-93). ....

 

and It also helps explain the differential treatment effect of penicillin/amoxicillin versus other antibiotic classes. Both M. catarrhalis and H. influenzae produce beta-lactamase, which inactivates penicillin and amoxicillin. Cephalosporins, on the other hand, have greater activity in the presence of beta-lactamase, while macrolides such as azithromycin are completely immune to the enzyme.

 

and finally... (I don't know if there has been a "red book change")

 

The American Academy of Pediatrics" 2006 Red Book still recommends amoxicillin as first-line therapy, but I'm guessing that will not be the case in the next edition, due out in 2009.

[amy s]

Ugh, that went just the way I'd feared. He would not give me more Cefdinir and, now that the chronically infected, cryptic tonsils are out (source of the strep, as he says) he wants to see what happens if we stop the antibiotics or at most resume the prophylactic amoxicillin.

 

I explained that the amoxicillin hadn't worked in the past against his strep and that my understanding was that many PANDAS kids have strep that is resistant to Amoxicillin. He said this was not true-- no strep is resistant to any penicillin-- but the reason the Amoxicillin hadn't worked before was that it hadn't reached the strep harbored in the cryptic tonsils, which the Cefdinir was better at reaching. Now that the tonsils/adenoids are out, any strep he is exposed to should be "surface" and the amoxicillin will work fine.

 

All I could do was kind of stare at him and say, "but... but... the families on the message board say..." And you can imagine how that was received.

 

I mean, what he is saying makes sense on some level-- I want to be optimistic that the T&A will help-- but I am terrified of watching my son disappear again and having to fight to get him back.

 

When I expressed concern that my son suffers BRAIN DAMAGE every time this thing is allowed to flare, he said there is no evidence of permanent brain damage, and when the PANDAS symptoms disappear it's gone completely.

 

He also asserted emphatically that IVIG might work temporarily, but the benefits of IVIG are, by definition, always temporary.

 

When I tried to tell him about Dr. K and the families who claim that IVIG was a permanent solution that has saved their lives, he compared Dr. K. (though it was nothing personal, he knows nothing about the guy personally) with a snakeoil salesman and said he felt quite certain that the man was getting very rich on this.

 

So I have one more week of Cefdinir, than I have to switch to prophylactic amoxicillin. Should I try to find a new pediatrician by next Friday? I know that if I try the amox, and his symptoms do indeed come back, I will have proven my point... but I am so nervous about taking this risK!

 

 

I have heard (almost) exactly the same statements regarding snake oil salesman...yadda yadda...people trying to take advantage of those who are desperate. Maybe Dr. K is getting rich off this...if so good for him. At least he is a mover and shaker and taking care of these kids by looking outside the box!

 

And another comment I wanted to make is that I don't think anyone knows or feels for sure that IVIg is a permanent solution. Many of us who have children who've had IVIg do not feel this this is permanent (we hope it is but)....we wait in fear every day wondering when the next thing will happen, just like the rest. I just know that my dd never got better until IVIg.

 

And the reason I say this procedure has saved her life is because her symptoms were so severe she would have ended up institutionalized at some point (and more than one doc tried). Now we feel that there is hope for her future and her life. She had a few episodes of time that she was better (very short lived) and still all symptoms were not gone like they are now (still 20 weeks post IVIg). Some people can get symptoms to clear with abs but we couldn't.

 

Also as you have found, I find that any time someone mentions a message board; they're in trouble with the dialogue with the physician. Always... always take peer reviewed medical journals articles (even if you have to pay for each one) so they can prove (when it comes time for them to prove why they made the decision they did). And I honestly believe not to even mention a message board.

 

I agree we must all become our own experts and not necessarily have blind faith that what we read on the internet is true. Now, this doesn't help you much right now. Hopefully you can find the answers you need for your child's personal situation. I know the fear you have about the symptoms coming back when changing the abx. Hang in there. Drug resistant super bugs are horrible as well, so you don't want to use up everything in the antibiotic arsenal and the wise thing is to use the minimal of what works for your child. But pandas is so severe that when it happens we all understand wanting to come at it with the biggest guns in the arsenal. It's hard. Keep us posted on your child's progress!

[bronxmom2]

yeah, as soon as I uttered the words "message board" I knew I was sunk..... ha!

 

The thing is, and the reason we are so grateful to find other peoples' anecdotal evidence on a forum like this, is that there are so few real STUDIES about this-- it's not even RECOGNIZED in much of the medical community.

 

I mean, the NIH does not even recommend T&A or antibiotics for this -- they recommend SSRIs and CBT, which as far as I can tell don't work AT ALL.

 

There's something deeply screwy about the way the medical community approaches the concept of "proof." And you don't really understand this until you have a sick child.

 

For now I'm going to finish the Cefdinir, switch the the Amox, and hope the deep-rooted strep was hiding in those tonsils and adenoids-- and try to believe he is better. My son is tired of feeling he is "sick" in some strange way he can't understand.

 

But you can bet I'll be back in his office the instant his behavior changes.

[EAMom]

Yes, Amy is right...you have to hand the doc the actual paper(s) and articles and not mention the msg boards. This link has some good info./papers for docs http://www.latitudes.org/forums/index.php?showtopic=3911, the paper on intracellular strep (Kaplan) is there...although info. on coagregatation isn't mentioned (here's the original paper that discusses coagregation.. http://www.pubmedcentral.nih.gov/articlere...gi?artid=523028 .

 

In certain circumstances, it may be okay to say, "other PANDAS parents I have been in contact with" but don't mention that it is online...someone, once you mention that it is online, it loses all credibility!

 

Bronxmom...you have hit the nail on the head!! It is amazing that NIMH/docs/medical community recommend CBT and psych. drugs for PANDAS without any proof/studies that they are safe or effective for PANDAS. On the other hand, NIMH specifically recommend against using prophylactic antibiotics/IVIG until more studies are done (even though the studies that are there suggest these approaches are very helpful, and they aren't planning on doing anymore!). arrghh! Meanwhile kids with PANDAS are getting sicker due to this cock-eyed advice (use psych. drugs, not antibiotics or IVIG).

 

And yes, nobody is doing any studies as to whether T & A helps...just lots of conflicting advice. At least (aside from the pain of recovery) the unintended consequences/side effects of T & A are likely more b-9 than loading up a PANDAS kid with multiple psych. drugs and no abs.

[Caryn]

Sheila Rogers Latitudes Online just released an article from Mitchell Sogin that discusses a Stanford Study on Antibiotic use and microbial bacterial flora in the gut. I was surprised to read the results of the study.

 

Here is a clip for those w/o a subcription to the ezine:

 

Stanford University, identified pervasive changes in the gut microbial communities of three healthy humans after a five-day course of the antibiotic Ciprofloxacin. Their results are reported in the Nov. 18 issue of PloS Biology.

 

Using very conservative criteria, the scientists identified at least 3,300 to 5,700 different taxa (genetically distinct types) of bacteria in the human distal gut, and antibiotic treatment influenced the abundance of about a third of those taxa.

 

“You clearly get shifts in the structure of the microbial community with antibiotic treatment,” says Sogin. “Some bacteria that were in low abundance prior to treatment may become more abundant, and bacteria that were dominant may decrease in abundance. When you get these shifts, they may be persistent. Some individuals may recover quickly, and others won’t recover for many months.”

 

In all the individuals tested in this study, the bacterial community recovered and closely resembled its pre-treatment state within four weeks after the antibiotic course ended, but several bacterial taxa failed to recover within six months.

[Chemar]

I wanted to follow up on this re antibiotics and mitochondria damage with what mrsD posted at NeuroTalk

 

 

This makes more sense to me because what is coming out of the new research is that ANTIBIOTICS and other drugs (like statins), can damage mitochondria. The autism community has some interesting new studies showing vaccines may do this and antibiotic treatment for ear infections or other things that happen to little kids, often precede the appearance of autism.

The mitochondria in our cells are basically similar and actually derived FROM bacteria. So agents that KILL bacteria, may kill our mitochondria too.

 

http://www.autism.com/medical/research/adv...antibiotics.htm

 

http://www.sciencenews.org/view/feature/id...ondria_Gone_Bad

 

not sure what the validity of any of that may be for anyone here but felt it important to mention as it is always IMO good to be informed on any potential side effects and then make best decisions based on balanced knowledge.

[EAMom]

Hi Chemar,

 

the irony of the deal with the mitochondria is (if I understand it right), that antibiotics many contribute to the development of autism.

however, in PANDAS kids, it is the strep (and lack of abs) that causes the problems (sometimes causing even autistic-like symptoms!!)

 

Hi Caryn,

 

there is no doubt that antibiotics would change intestinal flora. Whether this change is actually harmful to the child is another question. And, if it is harmful, is the harm significant enought to outweight the benefit for a PANDAS child? If I had to choose between (1) a psychotic child with full-blown anorexia nervosa (my child 1 year ago) and (2) a relatively normal functioning child with an altered gut flora ...well, the choice is really a no-brainer for me.