By Loren McCormac


How it all started

My son Kline, age 5, was prescribed topical steroids at 4 months old for mild eczema.  We were first prescribed them from Klime’s dermatologist and were never told the proper usage….we weren’t even told that they were a steroid and to only use for 2 weeks.  I was told to keep them in my purse and anytime he gets itchy put them on him and to put them on him 2 times a day indefinitely.

At 5 months old we went to an allergist to see if maybe Kline was allergic to something I was eating.  Turned out that Kline was severely allergic to dairy, egg, and all nuts and prescribed more potent topical steroids by the allergist. Going off those food did help his skin, but never for very long and we kept putting on the topical steroids daily as we were prescribed.

Fast forward 2 years and we are visiting family member on the  east coast and we ran out of Kline’s topical steroids.  He started to flare and got super itchy in a few days of being off of them.  But, I still hadn’t even thought that it was possibly a rebound from the topical steroids, so I got the steroids fill on vacation and returned to putting them on daily.

At this point, it was like we could never get back on top of the itch, the steroids stopped working and Kline was prescribed derma smooth oil  , to be put all over his body 2 times a day. Within 2 months of starting this steroid oil, Kline had a full body red rash, that would not go away and all of his topical steroids started to burn terribly.

Red Skin Syndrome

My husband and I decided , against Kline’s doctors wishes, that since the steroids no longer worked and burned him so much that we would stop them.  That’s when his skin took a drastic turn for the worse.  He was oozing and burning from head to toe, he itched all of the time and we could not figure out what was going on.  In a 6 weeks period we put $ 10k on our credit cards trying to figure out what was making his “eczema ” so insanely bad.  We pulled out our rugs, did extreme diet changes, went to every kind of dr. Imaginable holistic and western.  You name it we tried it, nothing helped he just kept getting worse and worse.

Finally, we found the answer.  On an eczema support page I begged for help. A mother said , “Have you heard of red skin syndrome?”. I googled red skin syndrome and in a second I had the answer, www.itsan.org, the international topical steroid awareness network.  Kline was suffering from topical steroid addiction withdrawal, aka, red skin syndrome.

The topical steroids we had been lathing on him for 2 years had shut down his capillary system and they need to heal.

The damage the topical steroid did to Kline was unimaginable.  He was covered in a head to toe red burning, insanely itchy,  oozing, flaking, scabbing rash.  It effected every part of his body, even where we never used steroids.  He would go 36 hours with our being able to sleep at all and he began living in the tub for comfort, spending up to 20 hours a day in the tub.  We had no life, he was unable to leave the house for pretty much the first year of withdrawal and even after that it was very hard to go far from the tub.

He couldn’t have a normal life. He missed out on preschool, parties, and all the fun things a child should be doing.

Healing

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Kline is now 31 months off topical steroids and getting his life back.  He has had a hell of a road to get here but he is starting to do the things a normal kiddo can do. He started kindergarden, has been able to take camping trips again, and play with his friends.  Sleep has gotten better but he still has some healing that needs to happen.  He  is still very itchy and wakes every few hours to have an itch attack, but over all his skin looks amazing!!!

When you have been suffering for so long and healing happens, you really appreciate  how a healthy life can be wonderful  and full of fun and adventure.  The struggles we have been through with Kline’s skin have been terrible but we can now do anything! We have no limits but what we create.  Even through such suffering we have developed amazing bonds with other red skin syndrome people around the world, thanks to www.itsan.org.  Through struggles come great joy.  When you finally get your life back it tastes so good!  It teaches us to not take anything for granted! I know Kline and my husband and I will be better people because of red skin syndrome.  More compassionate  to others and more appreciative of the little things.  

 

I will stop at nothing to inform people of the damages topical steroids can do to those who over use them, I am even trying out for the CBS show The Amazing Race to help get Kline’s story out there and hopefully save people’s skin!  I feel like now I can do anything , no fear, no hesitations!  I have to thank red skin syndrome for that and my brave brave boy that  has suffered more than most!  

If you are using topical steroids for eczema or any skin irritation on your child, educate yourself of the damage they could do at www.itsan.org and follow Kline’s story here on his blog,

http://klinestopicalsteroidhell.blogspot.com/2014_02_01_archive.html