Is it just me? Or are we hearing about...

[Stephanie2]

Everywhere I look (and I belong to 4 different message boards pertaining to pandas - 3 mainstream, 1 homeopathy) I am hearing about a TON of ongoing infections that are not remitting with multiple abx, and TONS of infections that are being contracted while on multiple antibiotics. I am in touch with one mom who literally has done 8 different abx in the last 3 months with no clearing of strep. And I'm not talking about remaining pandas symptoms, I'm talking about actual remaining strep infections with positive rapids and positive cultures. All of these threads I am referring to have positive cultures involved.

 

 

Did I miss these threads before, or are they really all popping up all of a sudden? I am wondering if the universe/God is trying to tell me something, or is it that a real problem is developing all of a sudden, similar to MRSA or something. I am on the fence between continuing to clear strep with abx with my 3yo or abandoning abx all together and placing this situation in my homeopath's hands and closing my eyes and praying for the best. She said that the homeopathic remedy is going to keep bringing it back up until it has all been dealt with, so what's the point of continuing abx? He has been on 2 abx recently and still has strep (azith and augmentin). And although my 6yo has not contracted this infection after 8 weeks of exposure (assuming b/c of his homeopathic remedy), I just have to wonder when it is going to hit him and I am just playing russian roulette by allowing the strep to go on (not that I seem to have a choice here). Then I will really be in trouble if he gets it. BUT I seem to really be in trouble right now either way I go!

 

I know most of you don't do homeopathy and don't know much about it. What I am really asking is:

 

1. Does anyone else feel that yes indeed there are more reports about resistance lately?

 

2. Does anyone have any idea as to what is going on with that?

 

3. Does anyone have any advice for me!?????

 

And I have my own chronic sore throat to deal with (comes back each time one of the kids gets strep, but I never get a positive culture, but it remits with antibitiotics! maddening!).

 

I am truly at a loss here and I feel like I need to make a decision and stick with it.

[Stephanie2]

The other thing is - are our kids developing "carrier status" and are in need of something like the addition of rifampin to the other abx?

 

I really don't want to go the route of tonsillectomy, seems like no one benefits long term...

[thereishope]

What I noticed is what seems like an increase in kids who are on Zith getting strep. I am not saying to pull any kids off of it, just stating an observation. Maybe the Zith resistent strain is spreading? Maybe we need a poll of what kids are on when the get strep again and for those not erradicating it, what antibiotics were tried.

 

As for your chronic sore throat, all I can think of if it isn't strep and it gets better with antibiotics is a possible sinus infection, but I think you said you ruled that out?

 

edit...I started a poll about prophylactic antibiotics and what's been helping/no helping clear strep.

Edited April 8, 2011 by Vickie

[pixiesmommy]

We're in the same boat. We are on high doses of abx now for Lyme and the strep still won't remit. We have tested positive monthly, consistently, since Feb 2010. In fact, in all the testing, the only negatives we EVER got were immediately before IVIG for Pixie in Sept 2009.

[ajcire]

I'm not sure what you mean by nobody benefits in the long run from the tonsillectomy but we had constant strep in my house until last year when I had my 2 kids who kept getting it's tonsils out... it's been a year and we have not had any strep in the house since.

[pixiesmommy]

3 of the 4 of us have had our tonsils out and we still get strep.

[SSS]

I'm on a private board I've been a member of for 6 years- we all had babies the same month of '05, about 150 of us, spread throughout the US, some in Australia, Canada, not a pandas or autism group.

Never hear from the other country moms about nasty infections, but man, Texas, there is some very nasty stuff going around that is not remitting, San Diego, a lot of the families have had a terrible year with infections that keep coming back going around and around.

I heard a quote that 70% of all the meat Americans eat is filled with antibiotics- not helping our cause.

 

Stephanie, it sure seems like you have active strep infections in your house a lot :-( Are your kids in school or centers where strep is spread around? I'm sorry- I don't have the answer to any of it. But have to admit, I feel relief at keeping my dd6 out of school the rest of the year after our 2nd IVIG next week.

Edited April 8, 2011 by S & S

[Stephanie2]

Vickie, I agree about the azith. In fact with this particular infection we did a sensitivity test after the azith did not work and it came back resistant to azith.

 

Thanks for starting the poll. The more info the better.

[Stephanie2]

I'm on a private board I've been a member of for 6 years- we all had babies the same month of '05, about 150 of us, spread throughout the US, some in Australia, Canada, not a pandas or autism group.

Never hear from the other country moms about nasty infections, but man, Texas, there is some very nasty stuff going around that is not remitting, San Diego, a lot of the families have had a terrible year with infections that keep coming back going around and around.

I heard a quote that 70% of all the meat Americans eat is filled with antibiotics- not helping our cause.

 

Stephanie, it sure seems like you have active strep infections in your house a lot :-( Are your kids in school or centers where strep is spread around? I'm sorry- I don't have the answer to any of it. But have to admit, I feel relief at keeping my dd6 out of school the rest of the year after our 2nd IVIG next week.

 

Sigh...yes...strep is our nemesis.

 

Actually, ds6 seems to be staying clear of it this winter (hasn't had an active infection since Dec. and hasn't had pandas symptoms since Jan.), and I pulled out my 3yo from school b/c it seemed as though he was bringing it home. But we are still working at eliminating this last one that I think he got at school.

[EAMom]

I'm not sure what you mean by nobody benefits in the long run from the tonsillectomy but we had constant strep in my house until last year when I had my 2 kids who kept getting it's tonsils out... it's been a year and we have not had any strep in the house since.

 

Yes..I think getting the tonsils out definitely helps some kids, but it is not a universal "cure". There are some kids that seem to get less strep once they get their tonsils out. There are other kids who get their tonsils out and it turns out that their tonsils are shriveled/infected (despite long term antibiotics) or large/infected, so the tonsilectomy gets rid of that "nidus" of infection.

 

I found out a high school classmate of mine has a son with PANDAS. He isn't 100% but getting her son's tonsils out a few years ago helped immensely. He's 10 now.

Edited April 9, 2011 by EAMom

[Stephanie2]

I'm not sure what you mean by nobody benefits in the long run from the tonsillectomy but we had constant strep in my house until last year when I had my 2 kids who kept getting it's tonsils out... it's been a year and we have not had any strep in the house since.

 

Yes..I think getting the tonsils out definitely helps some kids, but it is not a universal "cure". There are some kids that seem to get less strep once they get their tonsils out. There are other kids who get their tonsils out and it turns out that their tonsils are shriveled/infected (despite long term antibiotics) or large/infected, so the tonsilectomy gets rid of that "nidus" of infection.

 

I found out a high school classmate of mine has a son with PANDAS. He isn't 100% but getting her son's tonsils out a few years ago helped immensely. He's 10 now.

 

Thank you both for this feedback. Still on the backburner as far as interventions go, but so far I'm not feeling it in my "gut", ya know? But hey, if we could even eliminate only 1 or 2 infections per year, maybe it would be worth it.

[Mary M]

There were news reports about 3 weeks ago regarding "invasive strep" in Kalamazoo,MI and Colorado Springs, CO. The challenges so many of us are currently facing may be related to the strains of strep, the virulence of the bacteria that seems prevalent at the moment. Or maybe I'm trying to make a connection that just isn't there?

Mary

from Michigan

[Stephanie2]

There were news reports about 3 weeks ago regarding "invasive strep" in Kalamazoo,MI and Colorado Springs, CO. The challenges so many of us are currently facing may be related to the strains of strep, the virulence of the bacteria that seems prevalent at the moment. Or maybe I'm trying to make a connection that just isn't there?

Mary

from Michigan

 

I'm sure there is some truth to that. If you think about the movie "awakening", that was a virulent strain of strep that put people to SLEEP permanently! You just never know what strep can do...scary.