Considering IVIG

[Wilma Jenks]

I am researching the IVIG and considering it. I am told by one doctor that it is quite safe and told by another that the plasma exchange is much safer. With the IVIG, they are giving you other peoples blood, but with the plasma exchange, there cleaning your "own" blood. It would seem to me, that using your own blood is safer.

[Phasmid]

Might be safer, but few providers doing this, and procedure is a little more invasive and painful for the child. Also, some docs think it has to be followed by IVIG eventually anyway, so yes, it gives immediate relief (since autoanibodies and harmful antibody-antigen complexes are removed) but symptoms may return quickly if the underlying immune system malfunction is not corrected.

 

 

[LNN]

The only hospital I know of that does plasmaphersis for Pandas on a regular basis has implemented stricter procedures over the past year and there might be concern over the emotional swings you've described for your daughter. They are very concerned about any kid who is extremely active or easily agitated, for fear they may pull the PICC line out during the 3-4 day procedure or physically harm one of the nurses.

 

Do you have a Pandas diagnosis? If you are still struggling with diagnosis, I would wait on the IVIG. It seems to be most effective for those kids who are "pure" Pandas and don't have other infections or co-morbid diagnoses.

[Wilma Jenks]

We are not sure that it is pure PANDAS yet. I am testing her for Lymes as soon I can.

[eljomom]

Is there really a way to correct the underlying immune system malfunction?? That is what I want to know....does IVIG fix it?

 

Might be safer, but few providers doing this, and procedure is a little more invasive and painful for the child. Also, some docs think it has to be followed by IVIG eventually anyway, so yes, it gives immediate relief (since autoanibodies and harmful antibody-antigen complexes are removed) but symptoms may return quickly if the underlying immune system malfunction is not corrected.

[kimballot]

Wilma -

 

IVIG and plasmapheresis can seem like a "cure" when you read the post on this forum... but I really want you to think about this. From what I have ready, your daughter may not have PANDAS or may have something going on in addition to PANDAS.

 

IVIG can be very good if the infections are all gone and you need to fix an immune deficiency or an auto immune reaction. I am not convinced that your daughter's infections are gone. Plasmapheresis is good for removing antibodies, but there are only one or two doctors who do it AND if your daughter has an infection then she will start making antibodies as soon as the plasmapheresis is over an you will be in the same position again.

 

I think I read that you were working with Scott Smith at one point. If you are, you should follow his advice. From what I read, Scott Smith looks for hidden infections like lyme and mycoplasma and others. Those infections need to be treated first. You need to work with one good PANDAS specialist (like Scott Smith) to determine if your daughter has PANDAS and what infections need to be treated.

Edited February 22, 2011 by kimballot