steroids: work, then not work?

[FallingApart]

Hi all,

 

DH and I decided to give DD7 steroids again for the first time in about 3 years. Brief history is that DD has had about 12 IVIGs during a 18-24 month time period. The last one was 2 years ago. This is to say that she does respond to IVIG and steroids.

 

DD is currently 48 hours into this 5 day course. She also tends to be an instant responder so we typically know if a treatment will work pretty quickly. The first 24-36 hours of our current round we saw a major improvement in DD. Even non family members noticed it. They said that the angst was gone from her poor face. But then, when DD woke up today, all raging symptoms were back. Actually all symptoms were back. Has anyone else seen this? DH and I hope it is a short burst of roid rage and she will regain the benefits. I believe we have seen this once before with a different round.

 

Feeling very frustrated! Yesterday was the best day we have had in year. We felt like what a "normal" family must feel like. Today we are just feeling really ripped off for getting our hopes up...