My DS has a really rare skin/eye condition called JXG that causes lesions to grow on his skin and in his eyes and we are currently treating him for it with steroids. The pedi warned us that he would be hyper, really hungry and wouldn't want to sleep much but the first week he has been on it really wasn't that bad. We are now a few days into the second week and I don't think I can take much more of this! I have not slept more than an hour and a half in 2 days and now DS will not let us put him and down and wants us to stand up holding him at all times. The only time he is not screaming and pitching a fit is when he is eating. I just tried to put him down for a nap 3 times and each time he falls asleep and wakes back up and starts screaming. Now, I am pretty much at my wits end for today and he is sitting in his bouncy chair screaming. Has anyone else experienced your LO on steroids and how did you get through it? I feel like my sweet happy little boy has been replaced with an evil twin. Thanks for letting me vent.

Re: Vent: Baby roid rage...I can't handle it anymore
omg I am so, so sorry.
That would break my heart and drive me crazy too.
How long do you have to give the steroids to him? Until the lesions are gone? Are they at least getting better?
Again, so sorry. ((hugs))
He has to take them for 2 weeks and we are on week 2 right now. After that, he has to get off them for a least a few weeks even if it's not better. At this point, I can't see an improvement with the lesions on his skin but the ones in his eye could be getting better and we just can't see it. He is also on a steroid eye drop b/c one of the lesions burst and caused hemorrhaging in his eye so for all I know the oral steroid could not be helping at all. There's just no way to tell. Thanks for all the encouraging words everyone!