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JJMom39

Help with prophylactic abx's

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We are exactly one month into my son's PANDAS diagnosis and are now trying to figure out the best course of action for prophylactic abx for him. When he had his first episode 2 years ago we did not know we were dealing with PANDAS so he was only treated for strep infection (with amoxicillin). With his recent strep infection, the first abx he took was Omnicef and it did NOTHING for him. He actually got worse. He was put on azith and got much better, and a second round of azith seems to have helped even more. We have seen 3 doctors (the ped who diagnosed him; his regular ped; and a pediatric neurologist) and they have very different opinions/ideas about prophylactic abx. Needless to say this is making us crazy, but we are not surprised by the lack of consensus.

The diagnosing ped does not believe in long-term abx use. She will only give 5 days of an abx, then wait a week or two to see if or how much symptoms improve. If another round of abx is needed she will give 5 more days. She continues like this until symptoms improve. She seems very tied to this way of doing things. We don't like this approach--it's too rigid and doesn't take into consideration that there might not be improvement at all in 5 days of treatment (as we experienced with the Omnicef) so in the meantime things deteriorate (as we experienced). I am really bugged by a dr. who won't consider another approach, especially when the original approach obviously didn't work. Our regular ped has never treated a child with PANDAS, but had very good new information about which abx's the strep in our community is resistant to. A new study here showed that 50% of strep cases are resistant to azith; 30% are resistant to Omincef; and 30% are resistant to amox. She does not like to use azith for this reason (or Omnicef) and prefers to use clindamycin or Keflex for strep. BUT, when she did some research on propylactic abx for PANDAS she said that she would recommend daily amox and try it for one year. This is based on the fact that amox has been used for a long time as a prophylaxis for rheumatoid fever. BUT, what about the fact that 30% of strep here is resistant to amox??? This doesn't make sense either. She also said she would not use Augmentin because it's a big, broad abx and it's good to save those for when they are needed. And she didn't want to use clinda or Keflex as prophylaxis because they have to be taken 3 times per day and that's a pain. (Okay...but what if they work?) The ped. neurologist (who does treat kids with PANDAS) recommended 250 mg of azith one time per week. That made some sense until we heard the tidbit about 50% of strep here being resistant to it. (This dr. is in another city though so maybe that is why she still uses azith.) The azith really has brought my ds to a much better place so for now at least it seems to have worked for him. I am tempted to stick with it, at least for now. But the 250 mg/week sounds low. I know there is no standard procedure for prophylaxis and it is an individual thing, but how do you figure out where to start with making a determination about what to try? (I think our regular ped could be convinced to let us try just about anything we want, except maybe azith [but we can get that from the ped. neurologist]). It's so frustrating to be dealing with what seems like a guessing game! Right now I think I want to stay with azith because it has worked well, but is that crazy when 50% of strep cases here are resistant to it? I really don't know how to figure this out.

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We are exactly one month into my son's PANDAS diagnosis and are now trying to figure out the best course of action for prophylactic abx for him. When he had his first episode 2 years ago we did not know we were dealing with PANDAS so he was only treated for strep infection (with amoxicillin). With his recent strep infection, the first abx he took was Omnicef and it did NOTHING for him.

Was he treated for 5 days initially with Omnicef? Just curious because Omnicef is approved for 5 days for some infections, but I have seen websites recommend for strep that it should be prescribed for 10 days.

 

In 2009 when my DD had her first PANDAS episode, originally she was put on only 5 days of Omnicef. She was back in the office for a sore throat very shortly after finishing that course. She then had subsequent treatments of 10 days of amox, 10 days of augmentin combined with rifampin on days 7-10, and finally 10 days of clindamycin. It is my belief that the original treatment she was given was insufficient to treat strep, and then the second course of treatment (amox) was not effective enough either...that set her PANDAS in motion.

 

In 2010 when strep hit my house again, she was on 250mg of pen vk twice a day as a prophylaxis. My other 3 children tested positive and were given Ceftin and Duricef. She kept testing negative on the rapids, but her PANDAS symptoms were escalating. Despite the negative rapids, one of the peds in our practice prescribed a little larger than treatment dose of 10 days of Omnicef (45lbs -- 150mg 2x/day). We saw a lot of improvement. The ped said for strep, she thinks breaking the omnicef up into 2 doses a day is better even though omnicef if a 24hr antibiotic.

 

 

The diagnosing ped does not believe in long-term abx use. She will only give 5 days of an abx, then wait a week or two to see if or how much symptoms improve. If another round of abx is needed she will give 5 more days. She continues like this until symptoms improve. She seems very tied to this way of doing things. We don't like this approach--it's too rigid and doesn't take into consideration that there might not be improvement at all in 5 days of treatment (as we experienced with the Omnicef) so in the meantime things deteriorate (as we experienced). I am really bugged by a dr. who won't consider another approach, especially when the original approach obviously didn't work.

Sadly, most of the time, we parents are taking the lead on what we believe is the best treatment for PANDAS. I think your instincts are correct here. Why should your son suffer because a particular doctor is too rigid?

 

 

Our regular ped has never treated a child with PANDAS, but had very good new information about which abx's the strep in our community is resistant to. A new study here showed that 50% of strep cases are resistant to azith; 30% are resistant to Omincef; and 30% are resistant to amox.

Do you mind sharing whereabouts you are from? Do you have access to this study? My daughter takes 150mg of Omnicef daily as a prophylaxis. We live in PA, and my pediatrician has told me repeatably that the Cephalosporin class of antibiotics are all good against strep (Keflex and Omnicef are in this class)

 

I'm really curious to know if this study is basing the treatment failure of Omnicef on a 5 day course or a 10 day course.

Edited by Kayanne

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I meant to include where we live in my original post but forgot--sorry! We live in central Ohio. The study on strep and abx was conducted by Nationwide Children's hospital. I do not know if the public can have access to this study or not. I will have to ask our pediatrician when she returns from vacation. She did not specifically mention if the study looked at 5 or 10 day treatment courses, just that they studied to which abx strep in this community is resistant. (I will have to ask her about the 5 days or 10 days also.) The study would apply to strep in this community, not even other cities or communities in Ohio. She also said that strep is the only infection that has been studied in relation to how long the infection should be treated, and the conclusion was 10 days. (As far as I know this was not the same study as the one I mentioned above conducted by Nationwide Children's.) She did not say if this study was a general one or one based on strep around this area, or if this applied to treatment with any abx. I assumed she meant the 10 days applied to any abx, but that's another thing I will have to clarify with her. She treats strep for 10 days no matter what, and now uses clindamycin or Keflex because of the new strep study for this area. Re: Omnicef she said she used to like it but now doesn't love it because of the Nationwide Children's study showing 30% resistance. If it works for your dd I wouldn't worry too much about this study since it applies to this area only.

 

My ds was initially treated with Omnicef for 5 days. And his dose was split into two times per day. We did not do another 5 days because there was no improvement whatsoever. That is when we switched to azith. Maybe Omnicef for 10 days would have made an impact, but he was falling apart and I wasn't willing to take that chance. The diagnosing ped. who gave him the Omnicef and then the azith likes to use Bicillin shots more than azith because she thinks there is risk of resistance down the line with azith use. I didn't want to start with the Bicillin because I just wanted him to get better and Bicillin was an unknown to me. I had read a lot about azith and wanted to try that first. This dr. did not mention the Nationwide Children's study so I'm assuming she had not seen it yet, or I don't think she would have given us the azith. It has worked well for my ds, but I do have concerns about using it longer term since it had such a high failure rate in the Nat. Ch's study. Our regular ped. does not like Bicillin shots for strep but she didn't elaborate too much on why. There is just no agreement on any of this!! Because it is such an individual thing maybe the best we can do is find what works for our child, continuing researching and asking questions, and stick with what works for us until it no longer works.

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But the 250 mg/week sounds low.

 

I agree that 250mg/week is too low. How old and big is your son?

 

My dd has been on 250mg/day of Azith for almost 3 years. We started in June 2008 (about 43 pounds, end of 2nd grade). We have even had a couple of periods (about a mo. at a time) when we've increased her to 500mg/day. She is about 65 pounds now. The Stanford U. rheumatologist felt 250mg/day would be a safe dose for her for years.

 

In general rheumatolgists, Lyme docs, and the popular PANDAS docs on this forum (eg. Dr. Latimer, Dr. B.) are not afraid of long term full-strength antibiotics.

 

For whatever reason, PANDAS kids do better on full-strength antibiotics. When doses are dropped to lower prophylactic doses, they tend to regress (Saving Sammy is an example of that). Many pandas kids don't seem have a good immune system against strep (they get strep even while on antibiotics, they get strep more often), perhaps some of these kids have lingering strep hiding out (intracellular, or in sinuses) in their bodies, or perhaps the antibiotics offer some other benefits (immune modulation?).

 

Things I like about Azith:

1) long 1/2 life

2) gets intracellular strep better than other antibiotics

3) may have some activity against mycoplasma

Edited by EAMom

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Just another thought...

 

I always wondered (well it makes sense to me) that you would be more likely to have a resistant strain of a strep with lower doses of antibiotics vs. full-strength antibiotics.

 

If you use lower doses, it makes sense that some of the "fittest" bacteria might survive to reproduce. With higher doses, everyone is wiped out, so nobody survives to reproduce. Does that make sense to anyone? Isn't that why they say to always finish a course of antibiotics, so the few don't survive to become resistant? But couldn't you also have the same situation (survivors) with really low prophylactic doses?

 

I don't have any studies/literature on this...but it just makes sense to me.

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Just another thought...

 

I always wondered (well it makes sense to me) that you would be more likely to have a resistant strain of a strep with lower doses of antibiotics vs. full-strength antibiotics.

 

If you use lower doses, it makes sense that some of the "fittest" bacteria might survive to reproduce. With higher doses, everyone is wiped out, so nobody survives to reproduce. Does that make sense to anyone? Isn't that why they say to always finish a course of antibiotics, so the few don't survive to become resistant? But couldn't you also have the same situation (survivors) with really low prophylactic doses?

 

I don't have any studies/literature on this...but it just makes sense to me.

 

I totally agree. Low dose makes me nervous - not there yet.

 

I also like the idea of short bursts of second antibiotic to get the hiding strep or anything else. Aug with a couple of days of azith monthly. The idea of mixing it up with different antibiotics - just the basic ones not the newer big gun - also sounds good to me. I would support a lyme method - to get rid of anything. I don't think doing this halfa** is an option.

 

I haven't read anything to support these ideas - but it seems logical to me.

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My son is 8 and he weighs about 68 lbs. With what you said about your dd's dose, 250 mg 1x/week for him sounds very low. And, I had forgotten about the issue with regression when doses are dropped back. I do think we are going to keep him on azith, even with the resistance issue in this area. With all the benefits you mentioned, and how much it has helped him recently, I am nervous about switching meds at this point.

 

With long-term full-strength abx, what do you do about the potential for the flora in the gut to get out of balance? Have you found that probiotics are enough to keep things in check? I worry about the impact on the immune system from imbalance or over-growth of bad bacteria, etc., and our dr's aren't much help in this area. One doesn't worry about it, and another is really hardcore about the potential for problems. Just one more thing they don't agree on!

 

But the 250 mg/week sounds low.

 

I agree that 250mg/week is too low. How old and big is your son?

My dd has been on 250mg/day of Azith for almost 3 years. We started in June 2008 (about 43 pounds, end of 2nd grade). We have even had a couple of periods (about a mo. at a time) when we've increased her to 500mg/day. She is about 65 pounds now. The Stanford U. rheumatologist felt 250mg/day would be a safe dose for her for years.

 

In general rheumatolgists, Lyme docs, and the popular PANDAS docs on this forum (eg. Dr. Latimer, Dr. B.) are not afraid of long term full-strength antibiotics.

 

For whatever reason, PANDAS kids do better on full-strength antibiotics. When doses are dropped to lower prophylactic doses, they tend to regress (Saving Sammy is an example of that). Many pandas kids don't seem have a good immune system against strep (they get strep even while on antibiotics, they get strep more often), perhaps some of these kids have lingering strep hiding out (intracellular, or in sinuses) in their bodies, or perhaps the antibiotics offer some other benefits (immune modulation?).

 

Things I like about Azith:

1) long 1/2 life

2) gets intracellular strep better than other antibiotics

3) may have some activity against mycoplasma

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Just another thought...

 

I always wondered (well it makes sense to me) that you would be more likely to have a resistant strain of a strep with lower doses of antibiotics vs. full-strength antibiotics.

 

If you use lower doses, it makes sense that some of the "fittest" bacteria might survive to reproduce. With higher doses, everyone is wiped out, so nobody survives to reproduce. Does that make sense to anyone? Isn't that why they say to always finish a course of antibiotics, so the few don't survive to become resistant? But couldn't you also have the same situation (survivors) with really low prophylactic doses?

 

I don't have any studies/literature on this...but it just makes sense to me.

 

I totally agree. Low dose makes me nervous - not there yet.

 

I also like the idea of short bursts of second antibiotic to get the hiding strep or anything else. Aug with a couple of days of azith monthly. The idea of mixing it up with different antibiotics - just the basic ones not the newer big gun - also sounds good to me. I would support a lyme method - to get rid of anything. I don't think doing this halfa** is an option.

 

I haven't read anything to support these ideas - but it seems logical to me.

 

Both higher doses and mixing it up with different antibiotics make sense to me. Has anyone studied abx use in PANDAS kids to look at what works, what doses, how long, etc., or are docs going with educated guesses, experience, and what works for an individual child?

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We did do 1 mo. of Augmentin XR (1000mg 2x daily) this fall (instead of Azith.)...just to see if it would get us closer to 100%. Also, some docs (when dh was at the OCD conf.) recommended "mixing it up" (like you were thinking). We didn't see a difference with the aug. xr. Our ped did say Augmentin was more likely to cause yeast issues (vs. azith.), but we were okay...didn't have gi or yeast issues with either.

 

I do try to add a probiotics into smoothies when able....

 

When had tried to decrease to 125mg/day Azith. (this was in 3rd grade, pre-IVIG) we did see a difference...so went back to 250mg.

 

Funny, it's our non-pandas dd (who's not on abs) who has more yeast problems!

 

:angry::ph34r:-_-

Edited by EAMom

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We did 2000mg/day of Augmentin XR from August to June of last year. My son kept getting sick on it every 4-6 weeks with a very suspicious "strep-like" illness: fever, nausea, sore throat and headache. He would culture negative but we'd switch him to azith for a bit and he would get better. We finally saw Dr. B last June and he's been on 500mg/day of azith since then and hasn't gotten sick once. He started IVIG in December and has been super health since then, but even from June through December we had no streppy-like symptoms. I'm not sure why he kept getting what I believe was strep on the augmentin and I know it has been a great choice for many kids. We are still on 500mg/day of azith and I'm hoping to be able to reduce that a bit soon... maybe after his third IVIG in April. I'm scared to lower it, but it seems like such a high dose for long-term....

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Yesterday two of my kids tested positive on rapids for strep. My 4 year old has been on Augmentin 250mg twice a day for 10 months (weighs 42#). My 10 year old has been on daily Zithromax 250-500 for over 2 years ( 93#) AND two weeks ago took Augmentin XR 2,000mg for ten days. I am beside myself. If this does not prevent strep, what will?? We are treating my other 2 loss also bc their symptoms have been through the roof. My SD 14 is now on keflex, Zithromax, and Aug XR. We added zithromax to my DS4 and Omnicef to the other two kids. I am taking regular Aug for 10 days.

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My daughter was approx 42 lbs and 6 yrs old when one of the peds at the practice we go to put her on 10 days of clindamycin -- 300mg 3x/day. 900mg daily is the high end of an adult dose. I just wanted to put this out there in case someone is considering clindamycin...it can be given at higher doses.

 

At the time, it was definitely warranted. She had 3 rounds of antibiotics prior, and had just finished up a course of augmentin combined with rifampin. She had a very light positive on the rapid strep test, and was already into her PANDAS exacerbation -- we were just waiting to see the "specialist" at CHOP.

 

The ped even left the room to consult with the other doctors about giving that dose.

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