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Posted

Okay....so, I changed my kids antibiotic to 250 mg of Pen Vk a day, while pumping the pro-biotics....kinda to give their tummies a break...........am I nuts????? :blink:

Posted
Okay....so, I changed my kids antibiotic to 250 mg of Pen Vk a day, while pumping the pro-biotics....kinda to give their tummies a break...........am I nuts????? :blink:

 

we shall soon see my pretty :P

Posted

No, penicillin is the preferred prophylaxis for RF and SC and has been for YEARS....I totally understand wanting to give your children a break from the heavier abs.

 

...but dido to EAMom's post

Posted
Okay....so, I changed my kids antibiotic to 250 mg of Pen Vk a day, while pumping the pro-biotics....kinda to give their tummies a break...........am I nuts????? :blink:

 

we shall soon see my pretty :P

 

LOL, Fixit :P Yes, I guess we shall!

 

Come back and let us know how it goes!

Posted (edited)

And your little doggie, too! :blink: (hey Steph...whats so funny?!) :P

 

Yes, I am talking about ONCE a day...and I know FULL well they are not 100% protected,(not even close) but, it has been three years (I know, an episode is a day away)....it is summer....some days they just hang here, we do not live in a "neighborhood"...so........

 

 

Am I stll nuts????

 

Planning to up it and change back to Aug. if I see anything!

Edited by P.Mom
Posted
And your little doggie, too! :blink: (hey Steph...whats so funny?!) :P

 

Yes, I am talking about ONCE a day...and I know FULL well they are not 100% protected,(not even close) but, it has been three years (I know, an episode is a day away)....it is summer....some days they just hang here, we do not live in a "neighborhood"...so........

 

 

Am I stll nuts????

 

Planning to up it and change back to Aug. if I see anything!

 

i dont recall what you were on before...if it was immune modulating ...that might be something to consider...

but i totally get it....

why pump them up...if no contact...save your guns and their systems...

i also dont recall..is your child..."in remission" currently

Posted (edited)

I don't even know if pen 1x a day is effective at all.

 

I think Swedo said (re pen) if you miss a dose you are essentially unprotected for several days.

Edited by EAMom
Posted

Yeh, if I recall correctly, it was during a talk Swedo gave, she said gotta space pen. 12 hours apart and if you're more than 3 hours late, then you lose cover and it takes 3 days to get full cover back....

Posted

It is strange, though. If Pen VK totally leaves your system, in what??...8 hours? Then how does every 12 hour dosing keep a child fully protected??? It would seem they are just protected for the 8 or so hours after they take it?? Right?

Posted

Could you consider phasing out abx in a different way? Maybe by using a strong abx that gives longer coverage - but at a low dose? As an example, we use Azithro, and I think it is primarily immune modulating. As a caveat, she does not get sick a ton, does not have an underlying immune issue & is in a small school. We also have a full does for her if she has a flare, which we have to use about every 60 days - takes care of the issue in about 3 days, and generally coincides with ear infection or cold. On a regular basis, we use 3 ml of Azith every other day (about 100). She had a ton of strep in her school this year, but somehow did not get it herself. Not sure if this credit goes to the Azith or not. We'd love to phase out the abx and only use when needed, but until she has a year of nothing, are not comfortable with this at all. We did check with 3 neurologists and an immunologist on the dosing, as I was not comfortable with the lower dose at first. I should also add that while she has stomach ulcers (from BEFORE the abx was started) she has not had any stomach issues with azith - to the contrary, her ulcers seem to be gone for now as well.

Posted
It is strange, though. If Pen VK totally leaves your system, in what??...8 hours? Then how does every 12 hour dosing keep a child fully protected??? It would seem they are just protected for the 8 or so hours after they take it?? Right?

They gave my dh Pen VK 3xday... it's a pain to keep on schedule but I guess that's the most effective way to take it.

Posted
Okay....so, I changed my kids antibiotic to 250 mg of Pen Vk a day, while pumping the pro-biotics....kinda to give their tummies a break...........am I nuts????? :P

 

 

i'm stealing words from LLM's post on ivig "You have to do what you feel is best for your child and try not to second guess yourself. "

 

so often i am weary and just want someone to take him and heal him 100% but unfortunately, that doesn't exist for us. i am a big advocate of getting opinions and thoughts from others -- but in the end, after learning all that you can from all viewpoints -- you have to do what you feel is best

Posted

It just stinks that there are not enough doctors treating this properly, that we can actually go to for this type of advice...

Posted
It is strange, though. If Pen VK totally leaves your system, in what??...8 hours? Then how does every 12 hour dosing keep a child fully protected??? It would seem they are just protected for the 8 or so hours after they take it?? Right?

So according to what Swedo said, it takes a full 3 days to be fully protected...so in the beginning you should be piggybacking with another antibiotic for 3 days.

 

If you miss a dose of pen (or are late) then the levels in your blood completely leaves your system in 15 hours (3 hours late of a every 12 hour dose), and it takes another 3 days to get the blood levels up again?

 

See, I never understood that (I have heard it before)...and now it is beginning to make some sense. Am I understanding this correctly? Because I had considered pen vk a failure as a prophylaxis for us...but we were giving every 12 hours...and sadly some doses were a little late--I considered a 1-2 hour window okay...but if I am understanding this correctly...that window is cutting it way too close.

 

Perhaps is wasn't a failure, instead it was more compliance on our part. Truthfully, I was much more at ease with her on Pen vk, and so was her ped. It really is only good against strep...so the good flora doesn't really get comprised with pen vk.

 

However, this is where I am confused...I thought that by following the recommended prophylaxis for RF, we would be protected...it seems to be a proven protocol (my uncle took penicillin pills for 20+ years with no side effects or gut issues).

 

But, in light of this is MAKES PERFECT SENSE to dose every 8 hours not 12...so you always have an overlap of protection.

 

Would you all think I was crazy for reconsidering pen vk 3 times a day as a prophylaxis for my daughter? Of course, I wouldn't switch until weeks past her T&A and we are sure she didn't get any strep into her system during it.....

 

Perhaps, we need to start telling new parents on the forum that Pen should be given 3 X/day and not twice.?? Any thoughts???

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