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Posted
Some parents (T.mom, Kayanne) have found that they are able to get back to 100% (or close) by adding steroids to the abs.

 

There was a nice small study done by Garvey and Snider "Treatment of Sydenham's Chorea with Intravenous Immunoglobulin, Plasma Exchange, or Prednisone." http://jcn.sagepub.com/cgi/content/abstract/20/5/424

clinical improvements appeared to be more rapid and robust in the intravenous immunoglobulin and plasma exchange groups than in the prednisone group (mean chorea severity scores decreased by 72% in the intravenous immunoglobulin group, 50% in the plasma exchange group, and 29% in the prednisone group)

This was followed up by a nice double blind study http://www.pedneur.com/article/S0887-8994(...0543-6/abstract

for Sydenham Chorea where the severity of the symptoms dropped dramatically in the pred group where they followed up over a longer time interval.

 

On the theory that PANDAS and Syndenham Chorea are similar, this would make a lot of sense. With PEX you are getting an immediate removal of antibodies. With IVIG you are causing significant anti-inflammatory and removal of some anti-host antibodies, with prednison you are suppressing the creation of new antibodies in response to antigen presentors. So pred would take longer but could have same longer term effect.

 

Most assuredly prophylactic antibiotics seems to help too - however, in our case we seemed to get exacerbations when our PANDAS dd was exposed to strep from her sister. This made it tough to keep the antibodies titers down.

 

It's all still a big experiment though...

 

Of course I might be a little nervous about doing a bunch of steroids in the middle of flu season. :)

I totally agree.

 

Buster

Posted

with the talk of the BBB opening or closing - is all that's going on with a strep invasion and resulting faulty antibodies what opens it or do we need to consider there's something else faulty in the body that allows it to open?

 

thanks.

Posted

To the best of my knowledge, the BBB can open to a lot of different things: high stress (increase epinephrine, high blood pressure, infections, ....) Essentially anything that can cause inflammation of the BBB.

 

There may be other transport mechanisms as well, but inflammation seems the most likely.

 

Strep gives off >100 different exotoxins. These exotoxins are pretty much what they sound like -- things the body doesn't like and treats as "foreign stubstances" that the immune system responds to. Stretolysin-O (for example) is one exotoxin produced that the antibody ASO is created to attack. There are also all sorts of super antigens (SpA, SpB, SpC, ... ) that are found to trigger pretty significant inflammation.

 

So yes, a strep invasion (or infection) would trigger inflammation and this inflammation in the susceptible inidividual might open the BBB -- we don't know because I don't think anyone has tested the drift of other material into the central spinal fluid. Kirvan found that 24.3.1 did cross into CSF, but how it got there, they don't know yet.

 

Regards,

 

Buster

 

 

with the talk of the BBB opening or closing - is all that's going on with a strep invasion and resulting faulty antibodies what opens it or do we need to consider there's something else faulty in the body that allows it to open?

 

thanks.

Posted

We did a 5 day steroid burst when we started the augmentin. The firt two nights I actually saw a spike in tics but were gone in the morning. Then by the 3rd dose I didn't see a spike nor improvement. Then there after things leveled off. It was until 3 wks of abx that I really saw dramatic improvement so I was puzzled about the effect of the steroids. Dr Latimer thought may it was just the initial shock of the steroids causing the spike and reccomends a month of steroids. We just finished the 5 day course and haven't tried longer term.

Buster, wow you know your stuff. Say it again one more time...ivig will fix all this crap? My daughter has been on augmentin for 6 wks and made great improvement at the 3 wk mark. We have still some mild tics but overall she looks good. Now it seems as though the improvement has leveled and we are at as stand still. Do you think maybe without ivig that this is as good as it gets? Or do you think even if the strep is gone it just takes more time to heal? I should be jumping for joy with her progress but am scared it will all come back.

 

Have you done steroids yet? Some parents (T.mom, Kayanne) have found that they are able to get back to 100% (or close) by adding steroids to the abs. I believe they did more than a short 5 day burst...more like 1 mo. of steroids. Of course I might be a little nervous about doing a bunch of steroids in the middle of flu season. :ph34r:

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