I agree with Rhonda & Dick…
That if she can find others ‘like her’? That she can connect with and understand better all the life things that are or can be affected by CIDP.
We all would love to deny that we ‘have IT’? But we do, and must make the best of what we’ve got with what we have.
If that means IVIG on some regular basis? Then DO it IF it works. I too have had an event of aseptic meningitis [in a hospital of all places] and I wouldn’t wish it on even my worst enemies. But I’ve had only ONE good AI bout over 8 years of infusions. Not bad overall considering?
The infusions can be managed properly to avoid meningitis and pre-meds and other aspects such as ports can help avoid future pain and problems. But…it means, if it works? A lifelong commitment to getting any sort of short or long term relief. It’s plain and simple get the medicine help? or not and suffer. Should the latter be the choice? Please don’t complain to me? You have the options and while none are fun, your daughter must choose what is the best way for her… considering both the long and short term benefits and detriments.
She is the one who must do the research and LEARN from it all. Then make her own choices. For good or not? They will be hers and hers alone to deal with. I truly hope she learns more and reconsiders.
As we adults all do for the good, the bad, and the rest of it.
There are many here who will be able to help her and not be shy about all the good and bad consequences of decision making. We all row in similar boats about this stuff. Hope and good things in the meantime!