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Posted

So, my daughter has PANDAS + an immune deficiency and I'm thinking about is it better to do PEX or IVIG...and then it occurs to me...Why couldn't both be done at the same time: Plasmapheresis, filtering out the antibodies and adding in the immunoglobulins at the same time. Why not treat the autoimmunity at the same time that you treat the immune deficiency? So am I crazy? Has this been done? is it even possible to do it?

Posted

I believe dr. Latimer has done this. You would do PEX first, then IVIG.

 

I don't know if you would necessarily do them at the exact same time...but maybe PEX followed by IVIG a couple of weeks later?

Posted

But, do you see what I'm getting at? You've already tapped into the circulatory system...you need both procedures...why go through 2 ordeals? Why not give her the IgG's to help her fight strep at the same time that you get rid of the bad antibodies (I don't want to give her time to make more). There is a lot I don't know about both procedures...

 

The reason I thought about it is when I was looking for insurance criteria for PEX....I couldn't find it listed, but under apheresis, it listed several kinds (3? I don't remember). But it seems like one was just to filter blood (like what they do for Rh sensitized newborns), but another kind was adding in donor plasma....so is plasma exchange a combo of both?

Posted

peglem,

did anyone suggest that, or is that your own wondering? I think its possible, and not sure, but I think I just read that somewhere, I think in a backpost. can't remember now, but it was just what you said...the PEX (cleaning out the antibodies) and then replacing with IVIG, something like that. maybe search around, if I see it I'll post.

 

 

Faith

Posted

peg- A neurologist did mention to me once that bad cases of pandas rec'd both pex and ivig. It makes total sense to me. We are going to pex, and I have been thinking about this a lot lately... My daughter doesn't seem to have an immune def. With your daughter's case, I think it would make complete sense...

Posted

Peg,

 

I believe Plasma Exchange is both procedures together. They filter the autoantibodies out and then infuse with donor IGG's when returning the plasma back to the body.

 

I asked my Immuno on Monday about PEX being a cure and he said that it was not a cure. It will remove the autoantibodies but then the next time a person comes in contact with the same bacteria that caused the initial autoimmune illness the body can produce the autoantibodies again.

Posted
Peg,

 

I believe Plasma Exchange is both procedures together. They filter the autoantibodies out and then infuse with donor IGG's when returning the plasma back to the body.

 

I asked my Immuno on Monday about PEX being a cure and he said that it was not a cure. It will remove the autoantibodies but then the next time a person comes in contact with the same bacteria that caused the initial autoimmune illness the body can produce the autoantibodies again.

What your immuno said sounds right to me...But, it doesn't make sense to just remove the antibodies without doing something about where the antibodies are coming from in the first place-so giving her IgG at the same time makes sense to me, becaue the donor IgG will help her body to fight off the strep (we don't think we're ever really eradicating it)....then, if she's not self re-infecting, we have a better chance of prophy. abx being effective....

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