7 weeks post-PEX

[1tiredmama]

If there has been no improvement in the first 7 weeks, does that mean PEX did not work? We did not, and will not, be following up with IVIG because our insurance does not cover it. Ds does not have any immune deficiencies.

 

Is there anyone out there who saw positive results from PEX later, rather than sooner?

[PowPow]

twice we saw improvements at one month. I am sorry you have not seen anything yet.

did you have positive response to steroids at all? I am sorry I do not remember.

[dcmom]

I am so sorry you are not seeing improvement at this point. Both of my kids were fully recovered by one month.

 

I don't know your son's history, but I am going to throw something out there. Are you dealing with ocd? Was he in a complete exacerbation when he had pex? Twice we have seen my older daughter recover from exacerbations, (recover from physical manifestations, odd and complete panic) yet have seen her ocd remain. What we found is that if we did therapy at that point, it worked! and was relatively easy, whereas prior to treatment it was next to impossible. If you are dealing with ocd (only), have you tried therapy since the pex?

[dcmom]

oh, and btw- neither of my girls had ivig, fwiw.