PEX question

[eljomom]

Not that my child is "debilitated" enough to be offered PEX, but just wondering, if PEX filters out the autoantibodies, isn't it filtering out ALL antibodies? What kind of immune system does that leave your child with? ARe all the antibodies they have to previous illnesses (the good ones) and immunizations filtered out too?

[dcmom]

Yes, good antibodies are removed also. The immune system has a memory (b cells), and is always ready to call up new antibodies. So- your child is NOT immunocompromised after pex. This is also why, PEX is not a cure for PANDAS, but a possible cure for the current episode.

[eljomom]

So what is more of a possible "cure"? PeX or Ivig? OR none?

[P_Mom]

Neither is a cure...in my opinion. I believe PEX and IVIG (as well as steroids) work to manage PANDAS. They can bring your child out of an exacerbation....and/or manage the PANDAS well enough for healing to take place. It is the hope of us all that, as Madeleine Cunningham put it..."the immune system tends to right itself over time." (interesting how TS gets better after puberty!) So, we use these treatments to get our kids "there" in the best shape possible. I am hanging onto her words! Dr. K states the same thing...."how well your child is doing while going through puberty will be how well they do long term." Are Cunningham and Kovacevic correct?? Nobody knows...only time will tell. But, I for one am going to do whatever it takes to get mey kids in the best shape possible before they go through puberty! Why not?? They may be right!

[dcmom]

Agree with Pmom.

 

There is really no scientific info about a "cure"- but there IS remission, and management, and maturing- all of which will give our kids excellent quality of life.