IF it works...how can we maintain?

[T_Anna]

Looking for suggestions and experience.

 

If PEX works, what can we do to maintain it?

 

What pitfalls should I avoid?

 

Thanks as always,

T.Anna

[PowPow]

This was the problem we had. Pex helped immensely after about 3 weeks or so, and effect lasted just a few months. This happened after both times of pex.

The ideal tx, that I can deduce from several different doctors, would be to continue with regular (monthly) IVIG/steroids for a period of time (6-12 months?) and/ or an immunosupressant to prevent those errant, wayward antibodies from wreaking havoc again.

[T_Anna]

Are the monthly IVIGs still 2 g per kg or lower (1g/kg)?

 

He came home late Saturday night. He is wearing new clothing (the shirt he changed on his own - progress?).

 

So far no real improvement except that his appetite was greatly improved (but he practically didn't eat all 5 days in the hospital) and he seems nicer, talkative, etc.

 

TIA,

T.Anna

DS15