(Here is a picture of kline and I in the hopital the day he was born, notice he was already haing rashes and red skin, could he have been already addicted becasue of my massive amount of clorbetasol (a high potency topical steroid) used during pregnancy and while breast feeding, is this even eczema? Dr. Rapaport said that babies do not come out with eczema, the delelope it a few months later...hmmmmm, very interesting!) ((also, please don't mind my huge breastfeeding boobs, they were bigger than the kids head, note I said were!! ;0) )
This blog has been a lifesaver for
me....it is cathartic and a great vent,sorry for all the cussing and
rants! And I pray it will save at least one person from our hell.
So, thank you all for listening to me and praying for us!! It is so great appreciated and needed!
Kline's up date:
So, thank you all for listening to me and praying for us!! It is so great appreciated and needed!
Kline's up date:
We are in week 11 of topical steroid withdrawal hell! And auto
correct if you change hell into he'll, one more time I will throw you
across the room!! ;-) He is in a very bad state of flare....he is oozing
most of the time From tummy, knees, elbow and nipple. And I must say
even though I love my baby with all of my heart, tickling his oozing
body is really gross. The ooze is sticky and smelly and just should not
be coming out of him!!!! He is not sleeping during the night at all, and
I mean at all....we are up till 6 or 7am and then he sleeps till 11am or some days even 1pm. Crazy how the itchy bastard takes over his body even
more so at night.
Others that have suffered from red skin, say that at
week 16 things start to improve some.....come on baby! 5 weeks can not
pass fast enough! He did let me put him in the bath yesterday and put
vasalean on him, yeah, which seemed to help his scabs. But everything
is a fight and the first 5-10 minutes in the tub are terrible with the
burning and itching! Then he will not get out, we are talking hours,
because it burns and itches so much when he gets out! Very typical for red skinners. I pray that he
will not remember any of this, but I hope it will make him a kinder
person and more compassionate to others!
Sleep well, itchy little bastard everywhere....and when I say that I am not talking about the person, I am talking about the itchy beast that takes over their bodies!
Xoxoxoxoxoxooxoxox Loren
Sleep well, itchy little bastard everywhere....and when I say that I am not talking about the person, I am talking about the itchy beast that takes over their bodies!
Xoxoxoxoxoxooxoxox Loren
Stay positive and remember you are doing the right thing. Kline needs you and Denny now more than ever. We love you and pray that the next 5 weeks fly. Even better, that the itchy bastard will silently go back into the tube where it came from. Love you! Love 'em everyday! GrandMa and GrandPa
ReplyDeleteWe need to live just a wee bit closer and have the kids a little bit closer in age so they could stay up all night entertaining each other (playing video games or something to keep their hands busy and not scratching) while you and I snuck in some power naps!!! I definitely know how you're feeling and I'm so sorry you are having to go through this. Hold fast to one day we will be free and clear of this hell!!!!! I do hope that for both of us that we do see improvement at 16 weeks (however, I am also trying not to get too excited in case it doesn't happen, especially since Z was on them so much longer than most of the kids). I do hope, though, as 16 weeks is an excruciatingly long time for anyone to have to deal with this hell!!!
ReplyDeletexoxoxoxo to you all!!
My husband's oozing began in November just as he weaned off the prednisone he had been on for a year (upwards of 40mg/day). It started on his earsand groin and has slowly spread over his whole body. It's been 6months and there are areas that are still "active" and others that are just red benign looking patches. Right now his armpits are the worst and flare with rice consumption (I think I've convinced him to ditch rice. Finally). They flare, ooze, flake ... and it even smells nasty. His bellybutton just entered the fun this past week so it's flaky and oozy. Here's to hoping Kline gets relief!
ReplyDeleteOh man Stacy......Good foR him for going 6months and keeping with it!! Not sure how the adults deal worth this!!! Interesting that rice brings On the oozing, Kline oozed when he was only eating 4times on gaps.....not difference for him! Best of luck and keep me posted on his progress!!! Love to hear healing!!! Xoxoxoxoxoxoox
ReplyDelete