Positive yet again

[nojo]

Hello all. Brief update. We are in the midst of a flare up, and I'm not sure which way to go. One of our family's main struggles is not totally seeming to be strep free. I think sometimes we must not have fully cleared our previous infection. Sometimes it must be a new infection. Bottom line, I cannot seem to get away from strep. My dd8 has pandas. Cunningham test results 174, and we were not even in a major flare during the time of the draw. She has no tonsils or adenoids. We have treated the dog and entire family at the same time. We removed both her and her sister from school to homeschool them at Thanksgiving to try and give her a break from the constant assault of illness. We are on prophylactic antibiotics, and have been on antibiotics most of the fall. (Most recently augmentin, but just switched to Keflex). Today I assumed that dd8's sister had strep b/c of PANDAS behavior showing up (the whole canary syndrome) but sister was negative and dd8 was positive. We have had false positive on the rapid test before, but our behaviour is really off, and handwriting is deterioating. Here is this round of questions:

 

1. Should you be able to test positive on prophylaxis?

 

2. Is anyone else testing positive on rapid but negative on culture?

 

3. Does this mean she is a carrier?

 

4.. I've seen Buster say the whole carrier state is not so benign, how do you treat a carrier?

 

5.. When we did our immune work up, we failed the igg portion. Dr. Latimer thought ivig was in our future. We saw immunologist who said although we were lower than normal range, we did make reaction to vaccines (except pneumo titers which weren't retested- we had failed those 2 years prior, revaxed, then passed) so immunologist thought we were ok. We average 10 positive streps a year. Our goal has always been to do the least invasive treatment to get her healthy. Are we just in denial, are the low igg levels the key, and we aren't truly getting rid of the strep b/c we don't have enough fighter cells to kill the germs? Would ivig remedy this?

 

At this point, because of our history, we have to wait for the culture, but we are treating with full strengh omnicef.

[fuelforall]

I'm not much help, but I suggest you look at my Rifampin post.

 

Use the IGG numbers to let insurance pay for IVIG,I say. Never mind the immunologist.

 

I sure hope IVIG can help kids like yours and mine.

 

Michael

[sf_mom]

I concur you need to move on to IVIG right away. Its appears the original strep is not resolving and therefore resilient strain that antibiotics alone will not solve.

 

-Wendy

[dcmom]

I am sorry for what you are going through- this is just my opinion, but if you are having 10 positive streps per year, it sounds to me like your dd is just not clearing. Possibly the strep is always there, sometimes showing up on the swab- sometimes the swab missing it. I mean, ten times is just not "normal" outside of our pandas kids. Maybe you could consider doubling the antibiotics for some time? and maybe consider ivig?

[thereishope]

I'm not going to be much help here, but I think others will say you should try to be clear of strep before going onto to IVIG. For those who have had IVIG, does IVIG aid in ridding the child of strep as well?

 

Does she get a follow up test at any point?

 

How many times has the culture came back neg, when the rapid was +? Maybe that was bad swabs. Something doesn't seem right about that.

 

Who is the one choosing the antibiotic to use? Latimer or the ped? Have you tried Zith or Azith? A friend who is a ped once told me that clindamycin is what she gives to carriers, but then I know carriers on this board that clindamycin didn't work. One more thing, did she try the high dose of Augmentin that others have had success with?

 

I'm sorry for all the questions. Just trying to brainstorm things that might help others help you.

[nojo]

I know that the amount of strep in our home isn't normal. Both my girls have had at least 10 infections each year for the last 2 years. My younger daughter doesn't seem to have PANDAS.

 

I know alot on the board have done ivig with good results, I'm just scared to put a blood product that comes from so many other people into her. I know they test for all diseases that they know of, but it is so scary. We've had multiple hospitalizations for asthma, and I just want to help my daughter in the least invasive way possible. I was really hoping by reducing her exposure to germs through homeschooling it would give her body a chance to heal. It is so discouraging.

[nojo]

I'm not going to be much help here, but I think others will say you should try to be clear of strep before going onto to IVIG. For those who have had IVIG, does IVIG aid in ridding the child of strep as well?

 

Does she get a follow up test at any point?

We usually do get rechecked after antibiotics finished.

 

How many times has the culture came back neg, when the rapid was +? Maybe that was bad swabs. Something doesn't seem right about that.

I agree, I really don't understand it. We've had it happen at least 2 times, but I think more. I found out they used to not send the swab to culture if the positive is rapid, but for us, they have to.

 

Who is the one choosing the antibiotic to use? Latimer or the ped? Have you tried Zith or Azith? A friend who is a ped once told me that clindamycin is what she gives to carriers, but then I know carriers on this board that clindamycin didn't work. One more thing, did she try the high dose of Augmentin that others have had success with?

Our pediatrician, we had don zith in the past, he doesn't want to use it long term I think b/c I have an allergy to it, and he doesn't want my daughter to develop it. We've had many communication problems reaching Dr. Latimer since our visit. I think the pediatrician having a phone consult may be our next step, or infectious disease.

 

I'm sorry for all the questions. Just trying to brainstorm things that might help others help you.

 

Thanks for the help!

 

Does anyone know if there is a strep specialist?

[thereishope]

I don't have any names for you, but do try to get a reference from here if you can. When my son was having a hard time during his second exacerbation, the neurologist called one of the main guys in infectious disease to see if we should switch antibiotics, and he said that penicillan or amoxicillan would definitley kill the strep! Well, it doesn't. Needless to say, I did not know then what I know now. Just research, research, research.

 

Oh, man, is that one messed up hospital I have by me.

[sf_mom]

Just so you know NOT all strains of strep can clear from antibiotics alone...... especially, if its intercellular, a resilient strain and your child has a compromised immune system 'low IgGs'. If in fact, Kawasaki's is strep related (many studies indicate that it is) the only known treatment for eradication is IVIG. Kawasaki's is easily misdiagnosed.

 

If you are constantly getting hit up by strep in the household and your daughter is positive while on antibiotics my guess is its resilient strain.

[EAMom]

How much does your dd weigh? I would try Azith...at a good dose and longer than just 5 days.

 

Our younger dd (non-pandas we hope, assymptomatic carrier) didn't clear on Augmentin but did clear on Azith.

 

BTW, IVIG might help your dd's asthma as well.

[nojo]

How much does your dd weigh? I would try Azith...at a good dose and longer than just 5 days.

 

Our younger dd (non-pandas we hope, assymptomatic carrier) didn't clear on Augmentin but did clear on Azith.

 

BTW, IVIG might help your dd's asthma as well.

 

46 pounds. Tonight as I reflect, I really think we were infected while on Augmentin. For whatever reason, Augmentin doesn't work for us. When I've looked over our two year history, every time we do Augmentin, we don't clear the strep so I guess that is why it isn't working as a prophylactic abx. My husband and I were trying thinking over the last two weeks, and the behavior issues were starting to ramp up again, and urinary frequency too. I don't know why I'm so slow on the to put all of these things together. We went Christmas shopping recently, and had to go to the bathroom in every store that we went to. I think we went at least 5 times while we were out. Tonight she told me she feels like she always has to go to the bathroom and her throat hurts (of course after I finally figured out from her crazy behavior something was up. )

 

How long is reasonable to request for zithromax to clear resistant/recurrent strep, and how what about prophylactic dosages? Is there any research that I can print out to give to the doctor?