Orapred: can it really do this much good?

[thenmama]

xx

Edited March 26, 2013 by thenmama

[peglem]

She probably won't so much crash as just slip back slowly (if she goes backwards). But, hey, now you have a rescue med!

[LNN]

That's great news! Burn those great feelings into your brain - you so deserve them and you're seeing what's possible.

 

My DS was on two separate month-long tapers and I used to jokingly tell people that if he were taller (he's 8 and about 4 feet tall), I'd keep him on the stuff all the time. The kid I saw during those months is the kid I fight for every day. It's what I consider the "real" him. For us, the improvements lasted for about a month, but he has lyme (didn't know it then obviously). Yours was a short course - Dr L may opt to prolong it in the hopes it will "stick". I think how long it lasts depends on whether DD becomes infection-free and stays that way. But for now, make sure she knows this is who she really is and you won't give up until this is permanent!

[dcmom]

How long was she on the pred? Maybe Dr L would consider giving you a longer course?

 

My daughters have both seen long lasting results from 30 day steroid tapering course- not a cure, but has been able to end episode- sometimes.

 

Also- as she is weaned off of steroids, I would put her on regular advil dosing for a week, and then taper off of that- learned that on a site for another autoimmune disorder- prevents rebound inflammation.

 

Fingers crossed for you!

[SarahJane]

That's great news! Dr. L will likely use that info (along with the Cunningham results...did you ever get to see those yet?). Steroids are usually used for diagnostic purposes, so it's good you had good results. Our son just lost some behaviors while the steroid burst was working...when the rages came back, we knew we'd gotten all we were gonna get. We had IVIg scheduled right behind it tho'. Good luck with the appt! Thinking positive thoughts for y'all.

[thenmama]

xx

Edited March 26, 2013 by thenmama

[amyjoy]

It must feel just so good to have these moments, of having your DD back. I hope you have a great night's sleep.