Stop topical steroid abuse!

Friday, August 10, 2012

The 6 degrees of red skin syndrome

To celebrate our accomplishment of going through 6 months of pure freaking hell, I will break red skin syndrome down for you! Break it down!

The 6 degrees of red skin syndrome/ aka.. topical steroid addiction withdrawal/ aka....steroid induced eczema.

1. The ooze......the stick gooey smelly liquid that seeps out of your unable to close capillaries! 

The 1st time kline's knee pits oozed, I started yelling at him because it was the middle of the night and I thought he had ripped his skin open and was poring out blood!  But, no!  It was the beginning of the oozing stage of red skin!  I will never forget the feeling of that sticky sweet smelling ooze on my hands as I scratched Kline all day and night long...kind of like a watered down honey. Nothing you ever want to feel or see coming out of your Child's skin.

2.  The flake....the shedding of your damaged dry skin.

The 1st time I figured out klines skin was sluffing off of him was one night early on in withdrawal, I climbed into bed and once again yelled at Kline and Denny, " Why is there sand in your bed every night?". Then in the morning when I took of his pj's and there was a pile of skin on the floor it hit me....holy shit it's his skin, not sand, you ass hole!  And so began our daily bed stripping and washing.  I have seen pictures of others going through red skin with piles and piles of dead skin on there is amazing how hard your body tries to start a new to rid you of the steroid damage.  Kline's flaking was very minimal compare to some...and since I am the worst house cleaner in the world, I am thankful for that!!  We will probably find kline's skin in the years to every nook and cranny of our un-kept house! ;-/ 

3. The insane itch and red fire burn...ah......the itchy bastard, as I like to call him.  The debilitating pain of the craziest itch and red hot fire burn you have NEVER experience before!!!

This is what people just don't get!!!!  There is no way to explain just how bad this pain and itch is for the red skinners! It is insane and unless you see them flare you just can't get it! It is not just an is like getting the worst sunburn you have ever had all over your body, then getting red ants to bite you and crawl all over you on top of the sun burn, and then getting the worst poison ivy all of your body on top of the ants and sunburn.  This is some crazy shit people!! And let's top it off with it lasting for months and months , day in and day out, never resting and never ending!  No wonder people with red skin can become suicidal!!!! Crap, I was practically suicidal just dealing with my kid with red skin!

4. The completely sleepless nights!.......the fucked up nights of a red skinners!  Not sleeping till the sun comes up and itching and burning all night long as you long so desperately for sleep!

As a parent this was the most debilitating for me, the lack of sleep!  Insane lack of sleep...lack of sleep like I have never ever seen nor ever want to see again! Oh yeah and let's top your lack of sleep off with your baby screaming and crying in pain all night as you rub, scratch, itchy, pet and blow on every inch of their body.  You become most likely clinically are raw, angry, depressed, and so sleep deprived you Can not think straight!  This is when you are not your finest...I have never screamed, cried or cussed more in my life!  I would punch the wall to get my aggression out and  pull my hair out, literally, anything to have some release from the stress and Insanity.  I can now see why they use sleep deprivation as a prisoner of war tool......anyone would take after dealing with the sleepless nights of red skin!!!

5. The smell....the sweet aroma of the dried skin, ooze, and olive oil baths!

Oh, man, the smell of our bathroom after kline's 13 hour baths is enough to kill someone.  It literally makes me want to puke!    I NEVER Want to smell that or the sweet yeast smell of his ooze ever again in my life. The smell hits my heart's like a flash back to all the horror or red skin! 

6. The scabbing.....the potato chips on your body!

After Kline oozed he would scab all over!  The backs of his knees felt like they had potato chips stuck to them.....and he still wanted you to scratch them so hard!  This has to be the part that looks the worst in kline's case.  My poor boy's nipple scabbed and fell off, scabbed and fell off, and scabbed and fell off so many time!  He got a new nipple ever few days for months!  And I can't even imagine the pain he was in when his poor pee nee was oozing and scabbing for months and months!  Heart breaking and unimaginable!

6 months ago I had no idea what the hell was going on with Kline and his skin.....and I had no idea what we were in for!  I will never ever ever get over the damage that a drug, steroids, have done to my son.  I would never imagine in a million years that still after 6 months of being off steroids, his body would still be trying so hard to heal itself.  The capillaries damage from the steroids is insane.

I hope and pray that each day this blog and kline's story saves just one person from the hell that our family and especially my boy has been through!

To anyone that does not believe in red skin or the damage steroids can cause...come spend a day at our house! I welcome you into our world of pain and torture to change your mind!  I wish kline's doctors that prescribed the endless steroids for his eczema could spend just 1 hour with Kline so they could see the damage their prescriptions did to my son.  In the wee hours of my insanity I curse kline's doctor..not for what they did as much as what they are doing now....and that they don't believe what my son is going through is a real thing.  That they are still prescribe massive amounts of steroids to other little kids truly breaks my heart and I wish that one day they see the light!

Enough preaching for now! Here we go into week 24!
Xxoxoxooxox Loren


  1. If i lived closer I would give you a break! I am so heart hurts and weeps for you...though moments of glimmer on a good moment..i know you cherish...Kline is on our list of well as you Loren and your family...<3 and {{HUGGS}}

  2. This is a great post, Loren. Such a great description and message to non-believers!

  3. Never more eloquently spoken, straight from the heart, unedited, raw with emotion and pain. Pain only a parent of a little one going through such hell. You are brave, strong and determined. You are loved! So is our Kline, the bravest boy we know. Love you! Love 'em everyday! GMa and GPa

  4. Loren,
    You described it perfectly. It is as if you were writing our story, too. Well done! Just wish both of our stories were children's stories instead of the long chapter books they are turning out to be!
    Love you and Kline (and Denny, too!)

  5. SO true. This describes red skin syndrome perfectly.

    Hopefully, soon you will be writing about 6 wonderful things with Klines skin: smooth, supple, itch-free, blotch-free, healthy and glowing! x

    Hugs to Kline. i had a big turnaround at 6 months, so hopefully he will too. xoxoxoxo

  6. I agree with everything everyone has said! Great post Loren, summing up all the joys (euphemism for horrors) of this syndrome. xoxo j

  7. Thanks everyone!m I hope at 6 months we see more improvements!!!! Xoxoxo Loren

  8. OMG... this is incredible and horrible. My little great-neice has red skin syndrome and it was just explained to be by her grandmother (my sister). I had no idea. I just read this and sobbed. I am so so sorry... not child should have to suffer like this because a physician's treatment.
    I do so hope Klien and all the children suffering with this will improve soon and YES... there should be measures taken to prevent this from happening to others... not by you... you have ENOUGH on you plate

  9. so sorry someone in your family is going through this too.....if they need support there are a few good ones, and facebook also has one. they can friend me on facebook and i can add them. let mne know , xoxxo Loren beth mccormac

  10. I'm going through it at the moment, into 3rd month and the dryness has been insane from pretty much the start
    I wake up and I'm extremely dry head to toe, like a mummy.
    How long was your son on the cream for?????