Need help figuring out throat culture/lab results in PANDAS children

[colleenrn]

Hi All,

I recently posted about my children and just got the test results. I am very confused about the results and wondered if anyone has input or has experienced any of the same results. To quickly recap our situation, I recently saw a behavior change (irritability, hyperactivity, oppositional behavior, very emotional, crying easily) as well as dark circles under the eyes of my 5 and 7 yr. old boys (not "formally" diagnosed with PANDAS, but based on the similiarity to my diagnosed PANDAS child, I know they are PANDAS also). In addition, my 12 yr. old (PANDAS)had an increase in tics and my 2 yr. old has screamed, cried and thrown fits MUCH more often than normal.

On Oct. 3rd I had the 5 and 7 yr. old cultured, results came back negative. We treated only the 5 aand 7 yr. old with 15 days of Zithromax anyway based on their behaviors and within 5 days no dark circles under eyes, by day 15 behaviors almost completely gone. After about 5 days off of the Zith, the behaviors slowly returned as well as the dark circles. After 12 days on no antibiotics I had my 2, 5, and 7 year old cultured, as well as myself. I also had titers done on my 5 year old who seemed worse off than the others. (MY 12 and 7 yr. old have had their tonsils and adenoids removed and I think my 5 yr. old gets worse behaviors b/c his tonsils are huge and are probably harboring the strep. ) My 2 yr. old also had what looked like a scarlatinaform rash all over his belly. We did not culture my 12 yr. old.

 

My doctor agreed to put the 2,5,7 yr. old on Zithromax that day based on their great previous response to it. I also started my daughter on Zithromax ON MY OWN using extra Zith that I had b/c she most definitely had an increase in tics. Today is day 4 on the Zith, dark circles gone, my daughter's tics greatly reduced, their behaviors are slightly improved, baby's rash completely gone.

I asked them to do a full respiratory culture,not just for strep A. Here are the results:

 

Colleen (the mom) Beta strep, BUT NOT A,C, G, or B

 

7 year old son: routine upper respiratory flora, heavy growth

 

5 year old son: routine respiratory , moderate growth

ASO 106 Anti DNaseB 1:170

 

2 year old: Group B strep (I have been GBS- group beta strep positive with all 4 of my pregnancies and even though I would be treated at 34 weeks with antibiotics, I would test positive again a few weeks after being treated so maybe I am a carrier of GBS??)

 

I am thoroughly confused, don't know what to make of it all. These are the first titers that we have ever done on my son AND he had been on 15 days of Zithromax 12 days prior.

One more piece of info I got today was my 7 yr. old titers that we did in Sept. of 2007 when he had a big increase in PANDAS behaviors. The ASO was 366. To my knowledge, the nurse at the dr's office had reported the titer to me as negative, but is an ASO of 366 negative??

So sorry for such a long post, but I am hoping someone can help me make some sense of this.

Thanks!! Colleen

[colleenrn]

I am sorry. I double posted and can not figure out how to delete one of the posts. Sorry!

Colleen

[dut]

Our dr. has dx our dd as PANDAS due to her total improvements on antibiotics even tho' her truly awful episode culture came back as "beta hemalytic but not Group A strep". During her last episode she cultured negative but I cultured for Group B strep.

 

I'm no doc/lab person but wondered how exact cultures are. The difference in strep groups can be judged from agar plates and certainly the difference between Group A and B is a matter of size of hemoysis around the colonies (although you can have non-hemalytic Group B too).

 

I also read a paper that said you need to do another type of test to really differentiate between the Lancefield Groups of strep with true confidence - antigen something..... I've gotta go now but will post it later if I can find it.

 

I'm now asking for 72 hour cultures and asking for them to report any strep at all to see if we see correlation with symptom exacerbations....

[colleenrn]

Dut, Thanks for your response. What antibiotic did you use for the Group B strep and beta hemolytic, non A? We are using Zithromax, but now I'm not sure if that is what we should be on.

[dut]

http://www.google.com/search?hl=en&q=d...mp;aq=f&oq=

 

here is some info regards cultures... and some more

 

http://www.textbookofbacteriology.net/streptococcus.html

 

don't know how reliable etc they are but worth a read.

 

Our dd had amoxicillin for her bad "beta-emalytic not Group A" episode back in April although we don't beleive it wiped it out altogether but instead it took up residence, we believe, in her anal tract as she got perianal strep 3 ish weeks later but that got stomped by 500mg of azithromycin once per week. We are currently in an episode, and have used azithromycin full course and now 3 weeks of prophylactic but I'm seeing symptoms coming back towards the end of each week and then getting better for the 2-3 days after her prophylactic dose.

 

Maybe the azith is knocking it down but not out or maybe the strep is gone and we are seeing the immuno-modulatory effect of the azith? We swapped to azith as she had a reaction on amoxi but she has just been through allergy testing for penicillin so we might swap back.. dunno.. you think you might have got it sorted, what works for your child and it goes and changes on you.. sorry not to be more help... good luck

[dut]

sorry the 1st link just sends you to a google page... it's the site at the bottom of the page you want.. the urine sedimentation one.. sorry

[colleenrn]

When we used Zithromax back in October, I saw results within 4 days- dark circles gone, tics about 50% gone, much less irritable. This time I am not seeing such a good response. My 7 yo has completely stopped ticcing, my 2 yo is crying less often, and my 12 yo is ticcing less, BUT my 5 yo, the one I am the most concerned about, still has the dark circles and tics. Could I have set him up for being resistant to the Zithromax b/c I gave it to him for 15 days, stopped for 12 days, and then restarted? Does anyone know if Group B strep can cause a scarlatinaform rash?? I know it is supposed to be caused by strep A, but after 2 days on the Zith, the rash was completely gone. That makes me wonder if the lab could have read the culture incorrectly and he has Beta strep and not Group B. The lab my dr's office uses is notorious for messing up.

Can anyone comment on the anti DNase B in my 5 yo being 1:170? I know it is best to compare titers to previous titers and that they say 1:170 is normal in school aged children, but what if he had been only one higher and instead of 1:170 it was 1:171? Then would it be considered elevated? This is so frustrating. I am trying to figure this out on my own as my doctor does not know what to make of it and my head is spinning. Thank you to anyone who may be able to comment.

Colleen

[pmoreno]

When we used Zithromax back in October, I saw results within 4 days- dark circles gone, tics about 50% gone, much less irritable. This time I am not seeing such a good response. My 7 yo has completely stopped ticcing, my 2 yo is crying less often, and my 12 yo is ticcing less, BUT my 5 yo, the one I am the most concerned about, still has the dark circles and tics. Could I have set him up for being resistant to the Zithromax b/c I gave it to him for 15 days, stopped for 12 days, and then restarted? Does anyone know if Group B strep can cause a scarlatinaform rash?? I know it is supposed to be caused by strep A, but after 2 days on the Zith, the rash was completely gone. That makes me wonder if the lab could have read the culture incorrectly and he has Beta strep and not Group B. The lab my dr's office uses is notorious for messing up.

Can anyone comment on the anti DNase B in my 5 yo being 1:170? I know it is best to compare titers to previous titers and that they say 1:170 is normal in school aged children, but what if he had been only one higher and instead of 1:170 it was 1:171? Then would it be considered elevated? This is so frustrating. I am trying to figure this out on my own as my doctor does not know what to make of it and my head is spinning. Thank you to anyone who may be able to comment.

Colleen

 

 

I think the way it works is that if the strep infection is current, the antibiotics will work to resolve it which could probably improve symptoms for a little while, but the antibodies are already still out there attaching themselves to the receptors in the brain and that just doesn't go away within a few days, it takes months (as long as there is no new re-infection which can only be guaranteed by staying on antibiotics continually) So you wouldn't really see an improvement long-term. My daughter had the IVIG, then got put on antibiotics long-term. Her symptoms were actually mild before all that for this particular episode. However, now 4 weeks into the antibiotics she is having worse symptoms than she was before - as bad as last year at this time when they first started. I know she hasn't had a chance to get strep again since she's been on the antibiotics - so the only thing it could be is just the antibodies causing problems (unless its the yeast in response to the abx).

Pat

[colleenrn]

I was wondering if anyone using Zithromax has seen a great improvement while using it, then stopped using it, and when you restarted the Zithromax it did not seem to work as well. I think I have seen a slight improvement in my 5 yr. old in the past two days, but when we used it last month, it was an immediate improvement.

Can anyone comment on whether Beta strep, non A OR Group B strep, would cause a rise in titers? OR is it just strep A that would raise titers?

Thanks, Colleen

[ajcire]

I hope it's ok for me to jump in here with a question... if my ds's symptoms were really bad a couple of months ago but I just got in to a dr. now and he still has some symptoms but they are not really bad and we just had blood work done could the strep levels have gone down to where it won't show us anything? I don't know if that makes sense.. I guess I am concerned that I didn't get the blood work done at his bad time... does it take a long time for the strep in the bloodwork to go down so that it won't really matter that I didn't get the bloodwork 2 months ago?

 

 

I was wondering if anyone using Zithromax has seen a great improvement while using it, then stopped using it, and when you restarted the Zithromax it did not seem to work as well. I think I have seen a slight improvement in my 5 yr. old in the past two days, but when we used it last month, it was an immediate improvement.

Can anyone comment on whether Beta strep, non A OR Group B strep, would cause a rise in titers? OR is it just strep A that would raise titers?

Thanks, Colleen

[michele]

Another question I'd like to post on labs for PANDAS symproms. Anytime you see an increase in PANDAS symptoms do you think you should have the ASO titers rechecked to see if they are elevated? Even when the child is not sick. Someone just told me their PANDAS Dr. gives a script everytime someone has strep in the household. Also checks titers and regardless if they are elevated treats with erythromycin. Also takes erythromycin , in addition to daily antibiotic pen vk. during episodes. I thought this was an interesting way to treat. Do some of you give a diferent antibiotic during episodes then daily or do you change amounts?

 

I am trying to figure out how to treat the episodes that my son has been getting even while on daily antibiotics. I have not changed my sons antibiotic during this last episode. He is still getting 300 mg of omnicef daily. Thanks.

 

Michele

I hope it's ok for me to jump in here with a question... if my ds's symptoms were really bad a couple of months ago but I just got in to a dr. now and he still has some symptoms but they are not really bad and we just had blood work done could the strep levels have gone down to where it won't show us anything? I don't know if that makes sense.. I guess I am concerned that I didn't get the blood work done at his bad time... does it take a long time for the strep in the bloodwork to go down so that it won't really matter that I didn't get the bloodwork 2 months ago?

 

 

I was wondering if anyone using Zithromax has seen a great improvement while using it, then stopped using it, and when you restarted the Zithromax it did not seem to work as well. I think I have seen a slight improvement in my 5 yr. old in the past two days, but when we used it last month, it was an immediate improvement.

Can anyone comment on whether Beta strep, non A OR Group B strep, would cause a rise in titers? OR is it just strep A that would raise titers?

Thanks, Colleen

[colleenrn]

Michele,

I would think that I would get a 72 hour throat culture as soon as I saw symptoms, if that was negative do titers. Do you know why they are using Erythromycin instead of Zithromax? They are both macrolides, but curious if they think E-mycin is better.

[colleenrn]

Erica,

The antiDNase B may still be elevated, but if he has untreated strep, the ASO may also be up. I am so confused b/c my 5 yo is responding to Zithromax, but his culture was negative and his ASO 106, antiDNase B 1:170, but he had all his usual PANDAS symptoms.

[EAMom]

We don't bother with titers anymore.

 

Our dd had titers drawn 2x. Both times were low/normal. The first time was 2 mo. after January FEVER (initial strep infection). She had full blown psychotic PANDAS with severe OCD/anorexia nervosa/tics and culture postitive (throat and perianal) but her ASO was only 31 and anti-dnase B was only 149. She initially improved on Augmentin/Klonopin/Lexapro (better mood, still lots of OCD) and then declined on Amoxicillin. At the end of April her titers were down to ASO 28 and anti-dnase B <60, but her symptoms were ramping again (throat culture neg...probably a false neg). Her symptoms didn't go into remission until Azithromycin (in June).

 

In some kids, titer levels may show evidence of strep (if culture is neg) but not for us (even though culture was positive!). Remember, also, that it is not the ASO or anti dnase-b that are the antibodies that are the actual problem in PANDAS...it is probably some other anti-brain antibodies (that are more difficult to measure).

 

We also don't trust cultures on our dd (since she is on abs), but would consider if she got a lot worse and couldn't figure out why. Her 5-year-old sister does get cultured periodically and we did see a mild ramping of PANDAS symptoms when our 5-year-old was culturing positive (no fever, no throat symptoms, doc was surprised). This happened even though our PANDAS dd is on prophylatic abs. I'm sure things would have been much worse without the abs! Our 5 year old appears to be a strep carrier.

[colleenrn]

EAMom,

Have you ever gotten a negative culture on your daughter when you thought she had strep? Or is it just her titers that are not elevated? I have at different times gotten positive cultures on all 4 of my kids (NEVER the rapid ones though), but more and more the past few years their cultures come back negative BUT they respond to antibiotics. They are now on day 11 of Zith and doing somewhat better.

One thing (and there are many, many things) that I am worried about now is the dose for my 2 oldest kids. Everywhere I read it says 12mg/kg/day is the optimal treatment dose. That would mean my daughter should be taking 500mg and my son about 350 mg. They are both only taking 250mg. When you were giving your daughter a treatment dose was it still just 250 mg?

My sister's 8 yo daughter is in the process of being diagnosed PANDAS and her dr said a treatment dose for her would be 500mg/day for 5 days. Any light you or anyone could shed on these questions would be so appreciated!

Thanks, Colleen