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Posted

Okay, Allie brought home a notice of a case of strep at school. I'm trying to figure out how protected she is now. I have a few questions. Probably asked before, but did we ever resolve these?

 

1) The PANDAS antibodies...are those normally made by all people in response to strep? Or are they anomalies, made erroneously by PANDAS kids? I seem to recall something about T-regs were supposed to destroy autoreactive antibodies.

So is the problem that the T-regs aren't working properly? I mean, are we dealing with an ordinary immune response that isn't being handled properly by the immune system, or an unusual immune response?

 

2) My daughter is 1 week out from her last IVIG. So is her own immune response suppressed? So if the antibodies mentioned above ARE mistakes made by her immune system, does that mean they will not be manufactured during this exposure, since she isn't making her own IgG right now?

 

3) The donor IgG in IVIG- is it IgG that has already differentiated to fit particular antigens, or are they able to be recruited to attack exposure to current pathogen exposure? Not sure if I asked that right. I'm trying to find out if the donor IgG (which should still be prevalent) attacks with whatever strep antibodies were present in the donor serum, or can/are they able to turn into strep attacking antibodies?

Posted

Ok I will try to answer best I know how, the donor antibodies are already assigned a protein(illness) which it will identify and attach to. So in theory she should not get strep throat if they identify the bug. But could produce an immune reaction to create more antibodies against strep. But again in theory, 1.)ivig either suppress production of new antibodies or 2.)the donor antibodies attach to the autoantibodies redirecting them not to attack the body. Number two is the theory my immune doc thinks is the reason why ivig works. However if the body is triggered to start producing the strep antibodies, it will continue to do it. But with the dose Ally gets there is sufficient igg to redirect a whole heck of a lot of antibodies gone astray. But Ally has a lot of autoantibodies (I remeber the cunningham test u had) so she needs a lot of igg to redirect. In theory her next ivig will help also if she starts to over produce antibodies. The leading specialists do not know exactly how ivig works, its all theory, but it should help her not get a full blown case of strep since her body should identify the bacteria pretty quickly. I hope this helps a little. The whole T reg stuff, I still haven't discussed with my doc, but u know Buster is probably the best guy to answer that! Has Ally been sick(flu, bacteria, viruses) since she started ivig?

Okay, Allie brought home a notice of a case of strep at school. I'm trying to figure out how protected she is now. I have a few questions. Probably asked before, but did we ever resolve these?

 

1) The PANDAS antibodies...are those normally made by all people in response to strep? Or are they anomalies, made erroneously by PANDAS kids? I seem to recall something about T-regs were supposed to destroy autoreactive antibodies.

So is the problem that the T-regs aren't working properly? I mean, are we dealing with an ordinary immune response that isn't being handled properly by the immune system, or an unusual immune response?

 

2) My daughter is 1 week out from her last IVIG. So is her own immune response suppressed? So if the antibodies mentioned above ARE mistakes made by her immune system, does that mean they will not be manufactured during this exposure, since she isn't making her own IgG right now?

 

3) The donor IgG in IVIG- is it IgG that has already differentiated to fit particular antigens, or are they able to be recruited to attack exposure to current pathogen exposure? Not sure if I asked that right. I'm trying to find out if the donor IgG (which should still be prevalent) attacks with whatever strep antibodies were present in the donor serum, or can/are they able to turn into strep attacking antibodies?

Posted

Thank you so much for answering! I was beginning to think nobody would! Yes, that does help quite a lot.

 

Allie has not been sick (that I know of, she's not had much of an immune response for several years before IVIG) since getting IVIG. She has not had symptomatic strep in at least 5 years, other than the PANDAS symptoms. I don't think she's really had actual infections during that time...she seemed to be a carrier.

Her behavior has been a bit erratic since a little after school started, and I was worried it was from strep exposure. She's put three holes in the wall at school w/ her head- this had stopped for several months before (we're getting ready to replace walls here at home because she's been so much better). Interestingly, the last 2 days, since the note came home (and the streppy kid at school got treatment) she's done much better, though has had incidences of unprovoked crying. So, I guess, between the IVIG and zithromax, she's as protected as she can get.

 

Her CamK levels were above the mean for sydenham's and her antiD2 was quite elevated. But that was from summer of '09 and she's had lots of treatment since then. Would be interesting to see where we are now, so much treatment later- soon as I feel like we can spare $400.00, I'd like to get that checked. Its just a curiosity factor at this point. We're trending in a positive direction and the retesting would most likely not alter treatment.

 

Again, thanks for your response. I really appreciate it!

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