Tested Sister after 14days Amox... + for Strep!

[matis_mom]

Hi all,

Well, I guess I now have proof that Amoxicilin does not work for us! My dd7 had strep at the beginning of Nov. We caught it right away, and they gave her Amoxicilin for 10 days, which she took religiously. Following Buster's advice (thanks for the 'timeline') my husband took her in today (roughly a bit over 14 days after finishing the antibiotics) and she tested positive. They were going to give her Amoxicilin again, but luckily my husband called and I said to ask for Augmentin. They were questioning that but in the end agreed (this was just at the CVS minute clinic). My husband and other daughter are getting tested as well, since they were the only two that did not get sick or have any symptoms while we all got sick, better safe than sorry.

 

I am so grateful to everyone in this forum! I never would have thought of testing to make sure the strep had been cleared... Just to think, this may be what keeps my dd7 from getting PANDAS herself!!!

 

Thank you, thank you, thank you!

 

Isabel

[matis_mom]

Make that 2... dd9 is also positive. They put them on Pen V Potasium? It was at CVS so that's the strongest they could prescribe. At least they didn't insist on Amox... I called the pediatrician to confirm, he said to go ahead and start, but that he thought it was a new infection (ie., he does not think that the Amox did not work). He said to try the Penicilin and then bring them in if they continue to have symptoms (well, neither one of them had any symptoms!), and we could try Keflex.

 

So I'd appreciate any input from those of you who've had asymptomatic carriers....

 

Isabel

[peglem]

My daughter is an asymptomatic carrier. We're trying to clear that right now w/ rifampin & augmentin. She's cutting molars right now, which has spawned a sinus infection- throat does not seem to be sore. We started the R&A therapy on Wednesday, she is still sick with lots of sinus drainage....Don't know yet whether that's good or bad.

But past experience: We spent @ 2 years doing regular courses of Abx, testing + on rapid 2-5 days after finishing a course. Only behavioral symptoms-which is what brought me back for a test 2-5 days later. The abx would improve behavior.

Once we got prophyllactic abx- We found out quickly that penV wasn't effective- + rapids while on it. tried a few more and finally zith- which was given in a way that she had"off periods...I would see behavior coming back on off days, but knew she'd be back on soon, so let it go...things were getting slowly worse, but kept thinking we were keeping it at bay. She had a +rapid on Sept. 1st, with previous dental problem. Since then she's had more dental "incidences" along with actual, symptomatic illness...which led me finally to see, because of eruptions of behavioral/illness symptoms associated w/ dental tissue damage that she probably has intracellular strep that is being released when the cells are destroyed.

[matis_mom]

My daughter is an asymptomatic carrier. We're trying to clear that right now w/ rifampin & augmentin. She's cutting molars right now, which has spawned a sinus infection- throat does not seem to be sore. We started the R&A therapy on Wednesday, she is still sick with lots of sinus drainage....Don't know yet whether that's good or bad.

But past experience: We spent @ 2 years doing regular courses of Abx, testing + on rapid 2-5 days after finishing a course. Only behavioral symptoms-which is what brought me back for a test 2-5 days later. The abx would improve behavior.

Once we got prophyllactic abx- We found out quickly that penV wasn't effective- + rapids while on it. tried a few more and finally zith- which was given in a way that she had"off periods...I would see behavior coming back on off days, but knew she'd be back on soon, so let it go...things were getting slowly worse, but kept thinking we were keeping it at bay. She had a +rapid on Sept. 1st, with previous dental problem. Since then she's had more dental "incidences" along with actual, symptomatic illness...which led me finally to see, because of eruptions of behavioral/illness symptoms associated w/ dental tissue damage that she probably has intracellular strep that is being released when the cells are destroyed.

Peglem,

Wow, what are we up against here? It is so discouraging... with seven kids, how am I ever going to see the end of this??? The two daughters that tested positive had no symptoms whatsoever, now I'm really going to be paranoid, rats! Luckily, my PANDAS ds is away for the weekend. My husband was joking that maybe we should send him to spend a month in Arizona with his grandpa...

Let me know how the new abxs work.

[matis_mom]

By the way, has anyone tried Keflex? That's what the pediatrician was suggesting if this doesn't work.

[Buster]

My husband took her in today (roughly a bit over 14 days after finishing the antibiotics) and she tested positive. They were going to give her Amoxicilin again, but luckily my husband called and I said to ask for Augmentin.

I'm so glad you thought to check. With our dd9's sister we had to use azithromycin due to needing to stop augmentin early due to a rash. Bottom line is check again post treatment. If she does test positive again, please see if they'll get an emm-type for the GABHS. Might be too advanced for most clinics but it would be great to know why it's not clearing.

 

Really glad the rest of you are getting tested.

 

Buster

[peglem]

Peglem,

Wow, what are we up against here? It is so discouraging... with seven kids, how am I ever going to see the end of this??? The two daughters that tested positive had no symptoms whatsoever, now I'm really going to be paranoid, rats! Luckily, my PANDAS ds is away for the weekend. My husband was joking that maybe we should send him to spend a month in Arizona with his grandpa...

Let me know how the new abxs work.

 

Funny...we live in AZ!

 

Sorry, when I made that post, it took me over an hour to complete because I kept getting interrupted, w/ 7 kids, I know you understand..

What I didn't make clear, is that we had no idea what we were dealing with at the beginning....so, we were just treating +strep tests, w/o infections happening...so hard for docs to even get a peek at her throat, but I think it was seldom sore...she didn't act like it was sore. We were told by specialists that she was a carrier, but they acted like that wasn't a problem, like only full fledged infections were problematic. Until now (and I have to credit Buster for finding and sharing info on this) we haven't seriously tried to eradicate the carrier state...I thought the smaller, phrophyllactic doses would keep the strep at bay. Having to fight so hard to get PEX and/or IVIG...it has become more urgent that we get aggressive with the strep, so that if we are given the chance for that kind of treatment it isn't wasted by self exposure.

I think it will be harder w/7 kids...but knowing the seriousness of the carrier state in a PANDAS kid gives you a leg up on me! Anyway, didn't want to freak you out!

[ajcire]

Peglem, that reminds me of before I knew about my pandas and what was going on with my ds... I had tested him for strep only because my daughter and I had it so I just figured I would check.. he had no symptoms that I knew of although while I can't remember now I am sure in hindsight he had symptoms that of course I didn't know were strep symptoms till I knew about pandas.... but anyway, the ped I saw treated him with 10 days antibiotics... the next time I was in for a time my daughter had strep I saw a different dr. I mentioned that I guess I should test my son because last time he had it too and he told me that he would never have treated him for the strep with the antibiotic if he didn't have symptoms, that some kids just have strep. He is also the dr. who told me I was crazy when I went back in to ask about pandas at a later date when I pieced stuff together.... I just keep thinking what the heck, what if I had seen him first and he didn't treat my son and I didn't know better until it was too late.... grrrrrrr...... I just don't get the whole carrier thing.

 

 

 

Peglem,

Wow, what are we up against here? It is so discouraging... with seven kids, how am I ever going to see the end of this??? The two daughters that tested positive had no symptoms whatsoever, now I'm really going to be paranoid, rats! Luckily, my PANDAS ds is away for the weekend. My husband was joking that maybe we should send him to spend a month in Arizona with his grandpa...

Let me know how the new abxs work.

 

Funny...we live in AZ!

 

Sorry, when I made that post, it took me over an hour to complete because I kept getting interrupted, w/ 7 kids, I know you understand..

What I didn't make clear, is that we had no idea what we were dealing with at the beginning....so, we were just treating +strep tests, w/o infections happening...so hard for docs to even get a peek at her throat, but I think it was seldom sore...she didn't act like it was sore. We were told by specialists that she was a carrier, but they acted like that wasn't a problem, like only full fledged infections were problematic. Until now (and I have to credit Buster for finding and sharing info on this) we haven't seriously tried to eradicate the carrier state...I thought the smaller, phrophyllactic doses would keep the strep at bay. Having to fight so hard to get PEX and/or IVIG...it has become more urgent that we get aggressive with the strep, so that if we are given the chance for that kind of treatment it isn't wasted by self exposure.

I think it will be harder w/7 kids...but knowing the seriousness of the carrier state in a PANDAS kid gives you a leg up on me! Anyway, didn't want to freak you out!

[smartyjones]

we did use keflex and it worked well. at the time, i thought he had a penicillin allergy - i believe that's why they chose keflex - now, after clarification, i just know he's twice reacted to some abx but believe it to be omnicef and amoxicillin. i don't know the differences and advantages/disadvantages of all the abx - only that we've seen results with keflex.

 

april 2006, 22 months old - first confirmed strep - vomiting once only symptom - brother had strep with only symptom whitehead acne-like breakout on face...zithromax - never confirmed strep was eradicated - now question if it wasn't and this started it all.

 

june 2007 - ped appt for potty phobia when initial train, holding urine, threw up. ped thought his throat looked like strep - rapid and culture neg

 

oct 2008 - pandas behaviors surface

 

jan 2009 - 5 days azith - horrible ramp-up of all pandas behaviors - better after off azith -

 

feb 2009 - change ped - 35 day keflex - after 3 days 100% return to pre-pandas

 

may 2009 - relapse - again 30 days keflex - good results but not total remission; we started with less dose than first time, upped it after about 1 weeks, saw improvements

 

i have such trouble understanding the "carrier state". there was a post here a while ago that said something about the benign state not being so benign - i think i really believe that. in feb 2009, both initial ped and naturopath wanted to just shrug their shoulders and write him off as a carrier. i just knew this couldn't possibly sound right.

[peglem]

We had this conversation w/ the ped on Wednesday. I said I thought that the strep had gone inside the epithelial cells because every time she has dental tissue damage, either cutting teeth (4 molars right now) or dental surgery- twice in her life, she's had big problems. He said its possible- that's what TB does, and they use a combo rifampin/abx to eradicate it. So that's why that combo. We're only doing 10days, then we'll drop the rifampin and go for the full strength augmentin. I'm going to get him to do another 5 days of prednisone after the 10 days (make sure BBB is closed) if this runny nose and general malaise goes away by then.

 

We're having diarrhea with this and haven't seen that w/ an abx in a few years....at least I know we're killing some bacteria, somewhere! I still don't know if we're getting this right...time will tell. Mostly I wonder if we need to do the rifampin longer....its used for a long, long time w/ TB.

[matis_mom]

My husband took her in today (roughly a bit over 14 days after finishing the antibiotics) and she tested positive. They were going to give her Amoxicilin again, but luckily my husband called and I said to ask for Augmentin.

I'm so glad you thought to check. With our dd9's sister we had to use azithromycin due to needing to stop augmentin early due to a rash. Bottom line is check again post treatment. If she does test positive again, please see if they'll get an emm-type for the GABHS. Might be too advanced for most clinics but it would be great to know why it's not clearing.

 

Really glad the rest of you are getting tested.

 

Buster

I wouldn't have thought to check if it wasn't for you guys Thanks.

And... what is an emm-type?

 

I am thinking more and more of how significant it is that we are catching this now... just to think, if there is a certain genetic predisposition for PANDAS, and some of my kids don't show symptoms, I could have ended up with more than one PANDAS child... Is there anything out there on why some people tend to catch strep more than others? We were going to have some friends over tonight, and we call them to let them know about the girls, and our friends said "I have to be more careful for myself than for the kids, last year I got it five times!" Needless to say the evening was cancelled.

[thereishope]

Mati's Mom, When is your baby due? Talk to your OB about getting IV antibiotics during delivery even if you test - for B strep prior to delivery.

[matis_mom]

Mati's Mom, When is your baby due? Talk to your OB about getting IV antibiotics during delivery even if you test - for B strep prior to delivery.

Due January. I've had so many positives for Strep B that even if it's negative when they check this time, they'll do the abxs anyway. My problem is the last two have been very quick deliveries (with the last one they didn't even have time to put the IV line in!), so I'll ask him about maybe doing something before hand. But then we start the whole candida/thrush cycle...I guess I'll bring the probiotics with me to the hospital

[matis_mom]

Anyway, didn't want to freak you out!

I guess sometimes I need to get freaked out in order to take action, so getting freaked out is not a bad thing in this case! Knowing what other families have gone through helps me be more assertive with the pediatricians, and move on if I find one of those who just doesn't get it.

[thereishope]

I hear you about quick deliveries. I've learned to tell the OB's what to do so I can get my epidural and have time to get it to work. They never believed me when I would say, don't break my water until the epidural is in.

 

 

 

Mati's Mom, When is your baby due? Talk to your OB about getting IV antibiotics during delivery even if you test - for B strep prior to delivery.

Due January. I've had so many positives for Strep B that even if it's negative when they check this time, they'll do the abxs anyway. My problem is the last two have been very quick deliveries (with the last one they didn't even have time to put the IV line in!), so I'll ask him about maybe doing something before hand. But then we start the whole candida/thrush cycle...I guess I'll bring the probiotics with me to the hospital