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

[ajcire]

Thanks... I think I am just afraid that since I didn't get the blood drawn during the more severe of his symptoms that it won't show anything and I want it to show something if it's it. I am very frustrated as today has been a week since his blood was drawn and I haven't heard from the dr.. no idea how long this should all take. I called the office today when they should be there and all day I got a machine telling me if I was calling for scheduling or test results to call when they are opened.. grrr.. they were supposed to be open from 8-5 today...

 

My concern is that the blood was drawn last week... as of today he has gone to sleep 2 nights without me having to sit outside his room.. just having to "check" on him and he is not clearing his throat like he was...so goodness what the heck happened ... I got his blood drawn and now he's fine... that would figure for me... watch next week it will all go down hill.. 2 months ago when this started and when I tried to get the dr. appt but couldn't get in until last week he was having fierce outbursts at bedtime, clearing his throat like crazy, and being very very short fused... he still is a bit of a short fuse but not like he had been since the end of August.

 

 

 

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

[EAMom]

Hi Colleen,

 

On PANDAS dd we did a 2nd throat culture at the end of April (done same time as 2nd blood draw) and it was NEGATIVE. I assume it was a false NEG at the time as symptoms were ramping. PANDAS dd was on amoxicillin at the time. (She has been on some kind of antibiotic since diagnosis in March.)

 

Our strep carrier (non-pandas I hope) younger dd cultured POSITIVE (rapid) in March (same time as PANDAS dd) , then NEGATIVE at the end of a week on Augmentin but then POSITIVE (again) 2 weeks later...so I think a similar thing happened....the antibiotic suppressed strep enough to get a neg. culture. In our younger dd's case, once she was off antibiotics for a couple of weeks the strep that was hiding out in small numbers came back and was culture-able. 2.5 weeks after 5 days of Azithromycin (in April) younger dd stayed neg so I believe that was really she was really neg after the Azithromycin.

 

When we started Azithromycin on PANDAS dd in June we saw some mood improvement after 5 days...but OCD (anorexic behavior, questions) didn't improve until 10 days of Azithromycin. She was 98% after a mo. (still on 250mg Az /day), still had some tics, mild anxiety, edginess but, quite good. After 2 mo. I would say she was 100%. She was about 44 pounds (should have been about 50) when we started Azithromycin (250mg/day). Now she's 56 (she regained the weight she lost b/c of anorexia nervosa and also grew)...she's still on 250mg/day. It's hard to say if just 5 days of Azithromycin would be enough for a kid with a bad pandas episode... I don't think it would have been for us. Plus, we don't know how much of Azithromycin's benefit was from its immune modulating effect (vs. just killing the strep.)

 

I think some of these kids have strep hiding out in difficult to culture areas (sinuses?)...that they respond to antibiotics says something.