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Posted

I feel like this question has been asked a lot, but can we get a simple definition out there? For anyone whose child is "doing ok" right now, what is the definition of adequate prophylactic abx?

 

What is the best drug?

How high does the dose need to be?

How often does the child need to receive it?

For how long?

 

It seems like most people are on Zithromax. We are as well. Based on your feedback, we are now doing it daily. But, how long should we give it daily for? We are going to see the ped tomorrow and I want to tell her the dosage change we made and suggest we keep this change for x time. But I don't know how long that should be for. Is the daily recommendation for 1 year or is that for the "until PANDAS is a distant memory?"

Posted

I don't have as many answers as I would like, but I don't think the 'experts' do either.

 

Per Dr K-

his protocol is Augmentin for 1 year (or possibly more, but at this point he stands firm on just 1 yr) post IVIG. This, he says, is per his own studies.

 

vs

 

what he says the Swedo study and Latimer did/do, which is abx (not sure which) until puberty.

Posted

There was a lecture by Sue Swedo where she said it isn't reallly known how long to continue abs...

 

She mentioned that they keep upping the age recommendation for prophylactic abs for RF.

She also mentioned that Pennicillin has a short 1/2 life so it must be given 2x daily. If you miss a dose you are unprotected for several days.

 

Azith. has a longer 1/2 life. Azith is usually taken daily (sometimes 2x weekly). If you miss a day (or are late with a dose by a day) you should still be okay b/c of the longer 1/2 life.

 

The advantage to pen is that it is narrow spectrum so you aren't having as much as an impact on "good bugs". Azith. is broader spectrum...and also more clinically effective against strep.

 

Augmentin is also more clinically effective against strep (vs. pen). However (I personally as a parent) would not be comfortable giving it only 1x daily...I would want to give it 2x daily.

 

Dose would depend on the drug and the child's size. Some kids do seem to do much better on higher full-strength antibiotics (like Saving Sammy, T. Mom, my dd, Diana's son) vs. lower doses...so there is likely something more going on besides straightforward strep prevention (perhaps immune modulation; or a poor immune system against strep which is hiding out somewhere, that requires higher doses).

 

As a note, some kids will be "okay" on a lower dose of amoxcillin or pen, but will do much "better than okay" on a higher dose of Azith. or Augmentin.

Posted

Falling apart-

 

Good post, I am struggling with this too.

 

DD is on zithromax 2x per week, and doing okay. But, I would like to see her better. I am upping her dose for 10 days- to daily. I guess if I see a change, then I will have to decide whether to pull back, or remain at that level.

 

Keep us posted on what you decide...

Posted

This is what I think:

1) if you had IVIG, the first year afterwards is the most critical in terms of not getting a new strep infection. So, after a year, I would be more comfortable going to a lower dose (vs. right after IVIG).

2) If no IVIG, I think it is worthwhile to try a high dose for 1-2 mo. If your child is doing really well after that, then you could try lowering the dose and notice if you make a difference. If you notice a decline on the lower dose then you could always go back up.

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