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Hi all.

 

Since Sept, my 7.5 yo son's tics have been really low, with one short spike during a croup infection in Feb. (that ended precipitously with a major blood draw for testing) and a current really high spike that started in early April after an impetigo infection. What concerns me right now is that this is the first time the tic is a pattern -- rubbing his eyes, then slapping his face -- and that he seems to be hurting himself with this slapping. It is now much much worse than it has been. And our state testing (2 weeks of it) starts in 9 days.

 

We have run so many tests over the last 18 months, and only the DNASE tests come back abnormal. Our ped is wonderful, but has no experience with PANDAS. We are on Bontech supplements, plus probiotics. I want to try azithromycin, but our ped is reluctant. Can someone advise me:

 

1) is azith a good idea?

2) if so, what is the standard dosage for something like this?

3) where can I find external references -- Medline, etc -- to show our ped to help make her more comfortable with this.

4) any PANDAS doctor recommendations in the Southern California area? Especially within Kaiser HMO, but really, anyone.

5) any other recommendations?

 

At my request, she just authorized nystatin, but then I read up on the "die off" reaction which has a high likelihood of a flu-like reaction and that is just what we *don't* need at this time of H1N1 concern. So I think I want to hold off on that for a couple of weeks until we see what H1N1 does. (I also don't want a weakened immune system for him if there is a potential pandemic going around, you know?)

 

Please, any help would be appreciated.

 

Thank you.

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Lfran,

 

was the impetigo strep? did they culture? was he on abs? which one? how long has he been off them?

 

have you done a throat culture? I would definitely do one, esp. if tics have recently returned. Do the 72 hour culture if the rapid is neg. Many pandas kids have no other signs of strep other than tics or behavior change. Note: not all cases of strep will culture positive (eg, strep can hide out in the sinuses where it is hard to culture). So, sometimes you need to do the Azith. trial even if the culture is neg. However, you may have a better chance of convincing your doc to do the abs if you have positive culture. It's also good to be able to document the positive culture with the tics....as evidence of PANDAS. I am a big believer in cultures as my dd was culture positive (as was her carrier sister) with full blown pandas --but her titers were low.

 

PANDAS info (under helpful threads) http://www.latitudes.org/forums/index.php?...art=#entry27173

 

info on titers (read Aug 24 and Jan 11) http://www.latitudes.org/forums/index.php?...art=#entry29305

 

How much does your son weigh? Our dd (55 pounds) takes 250mg/day azith. We started with a 1 mo. trial and have now been on it for for almost 1 year.

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EAmom- My dd also had a positive culture with pandas. She is 5 and terrified of doctors and needles. We did one set of titers (in the normal range) after she had been on antibiotics for a few weeks. Her neurologist seems to want to see more titers (he thinks the trend is more important than the height of the #). I hate to do this with her, and kind of feel since we had the positive culture- its not necessary.

 

Have you done much bloodwork? Have you seen a trend, even when the numbers are low? Does your dr want you to do titers?

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We had titers drawn in March 08 (when both dd's had positive cultures and PANDAS dd was in hospital due to PANDAS anorexia nervosa) and again April 08. Both times ASO/anti-dnase B were low (lower in April even though symptoms were starting to ramp again). There were 2 different labs which does make comparison tricky. We also had them done recently (via the immunologist). They were drawing blood for some other tests, otherwise we wouldn't have bothered. They were also low (even lower than 08).

 

I think a lot of docs think (b/c PANDAS is autoimmune) that it is a reaction ASO/anti-dnase b. Not so. IMO drawing ASO/anti-dnase b is really unecessary if you already have confirmed strep through cultures.

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