Pozitive energy

My little one is on PE for the first time, and I m so afraid…

I feel your fear. My neuro doc has been hesitating to put me on PE because the body's immune system is compromised. But PE is supposed to be very effective. Keep your little one protected from visibly ill people; and/or have him wear a mask. Good luck, and keep us posted! (:-)

She has second day of PE, bit she still doesnt feel better. Is it normal? Her neuro said next week she is goinf to give her PE with predinsone (oral)…

You have nothing to fear, except fear itself.

I'm convinced that those not afflicted with CIDP, those who are family and friends suffer much more than necessary and cause anxiety to the victim of the disease. Have faith and relax.

PE means the tike is not able to have IvIG? Good luck. CIDP is treatable.

What is PE?

Thanks
T



R.j. Stoll said:

What is PE?

If the PE doesn’t work almost immediately when complete, then it is not an effective treatment for CIDP and your neuro needs to look elsewhere. Giving a second PE treatment so closely after the first will compromise the body too much, and can be lethal.

Interested in an update on the little one’s plasma phereses. I’ve never heard of having only one exchange. I had a series of 7, spaced out every other day. It really turned things around for me and began my recovery.

Forgot to add that they also gave me prednisone…1000 mg iv at first, then less orally . 2 yrs.later I take 20 mg/day along with 2000 mg of cellcept. We’ve tried easing off the prednisone, but didn’t work out. Possibly going have another series of plasma phereses.

We are home now! Yes, she had 5PE,(every other day), but after 5.she got stafilocoky in her blood…then they gave her ivig (with medication for stafilocoky). Now she feel much beter…she is still on prednizone…

http://asheducationbook.hematologylibrary.org/content/2012/1/7.full

I use them interchangeably, maybe a mistake

R.j. Stoll said:

What is PE?