Babies: 9 - 12 Months

Vent: Baby roid rage...I can't handle it anymore

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.
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Re: Vent: Baby roid rage...I can't handle it anymore

  • I don't know what you're going through...But I hope it gets better! ((HUGS))
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  • Sorry, no experience with that, but I do hope someone is able to help you and it gets better for you.
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  • I don't have any experiene, but I wanted to say I hope it starts getting better soon. ((hugs))
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  • I haven't experienced any of that, but I can sympathize with you. I'm sure it is very difficult right now. Hopefully it's just while he's on the steriods and won't be a permaproblem.  You can only do so much as a mother, but it sounds as though your heart is in the right place. Do what you can and things will get better with time :)
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  • Oh my goodness - that sounds terrible! I'm so, so sorry. I hope it gets better very, very soon!! Do you have someone who could come over for a bit and help out while you get some rest?
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  • 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))

     

     

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  • I don't have any advice but I am really sorry for you and your little one. I have had to take steroids for my back a few times and can tell you I felt horrible and couldn't sleep so I can only imagine what it is like for your baby. How long does he need to take them?
  • imageSharonWantsABaby:

    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!

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