Stop topical steroid abuse!

Tuesday, May 8, 2012

Things I never want to hear my 3 year old red skin syndrome son say again!!

 kline 10 weeks off steroids!
1. "Anyone save me?!"

As we were itching on the couch he screamed out, " Anyone, save me?" in a question, like can anyone save me! So, heart wrenching! I told Him he is being saved by Dr. Rapaport and we aren't using anymore of those bad medicines that make you sick anymore!!!

2.  While trying to put Kline down for a nap he said,

" I worried mommy!"

I said, what are you worried about baby?

Kline, "I worried about my skin!"

I told him that he was going to get better!

And he said, "when?, soon?"

Well, how do you tell your baby you don't know when but it will happen?  I told him, maybe by the end of the summer!??? Let's hope!!!!

Another heart breaking moment that my baby should not be going through, if our doctors had known what topical steroids could do to his little body.

3. "I too itchy to eat, mommy!"

WTF?  This crap is so debilitating that he can not even eat when he is having an itchy bug cruel!  Hey, pharmaceutical company's are you getting this?

Number 4-9 I hear pretty much everyday, multiple times a day!!!

4.  "Itch me mommy!"

5. "Save me mommy!"

6. "Itch my pee nee!" , " itch my boob!", "itch my arm pit!" , and the ever so cute, "itch my leg pit!", you name it he asks for it be be itched.

7. " I got the itchy bugs."

8.  "It burns, it burns!"

9. "I so sick , mommy."  Or "I too sick mommy!"

10.  While we were out shopping I really had to pee and Kline said, " go potty quick mommy, if You pee pee your pants it's going to burn!" why? Because, when he has an accident it burns like a mother!  That is probably why he potty trained himself before he was 2!!!! Even clothe diapers bother his bum so much.

11. while I was having one of my crying fits one day, Kline said,

" why you crying mommy?  Here drink some water, it will make you feel better!  "

12. And another day during another one of my crying fits, Kline said,

  "mommy, no you cry, Pick me up!" and then my 3year old wiped away my tears,  Wrong in so many ways!

13. Sometimes 2 hands just aren't enough!

While I was itching him one day he said,

"Itch me with Your  5 hands!" apparently when you have red skin you need 5 hands to itch you, 2 just won't cut it.

14.  "Itch my pee née" , " blow my pee née", and the latest, "pet my pee nee" a little boys penis should not itch and burn so much, because of  the cortisone I was given by his Dr. To put on his diaper rash, his red skin is so bad on his groin and anus.  ( oh, did I tell you , you are Not supposed to put steroids on you face or groin! and definitely not everyday.)

And the most heart breaking, rip my heart out, step on it and grind it in the disposal...........

1 " Hurt me, mommy!!!!!  I want you to hurt me, mommy!"

Dr. Rapaport said that the itching makes them so crazy that they actually like it when they cut themselves with their nails while itching, because at least the pain is a different feeling than the itch.  So that is why my little 3 year old baby want me to "hurt him"by itching him really hard, so he can feel something other than the constant debilitating itch that is red skin syndrome. (ps. even though he begged, I did not hurt him) poor baby!

I am sure there will be more, very sad and pathetic things Kline will say in the months to come of his withdrawal, I'll  keep you posted!

None of these things should ever come out of your babies mouth and I hope to hell you never hear your baby say them!  If you do hear some of these thing, you may want to look into red skin syndrome, aka, topical steroid addiction withdrawal.

One sad mama, xxoo Loren


  1. Oh Loren, I feel teary for you. I had pretty much all the above just from an older child. You will get through it but there will be tears. Kids thankfully do seem to get better quicker, and I hope that as Kline is still so young that you will see some change for the better very soon. Thinking of you chick, keep battling x

  2. GrandPa see? Tears you up! Love 'em everyday! And yes Kline, GrandMa and GrandPa see. love you!

  3. Hi Loren,
    I've been lurking over here for a few weeks (I think from the GAPS FB page). I'm so sorry you guys are going through this crap but am glad you found the right doctor to help heal Kline. We're on our own biomedical journey with our kids and it just plain sucks when it takes so long to find the right people to help. Good luck!

  4. My heart goes out to you and your gorgeous boy. My sons was also covered in eczema as a baby so I can really empathise. You have probably tried everything but I have to ask whether you have had him tested for food allergies. this is what caused my sons eczema.Praying for healing for you.

  5. Hi all, casey thanks for lurking.....share this where ever you can and I hope you babies will be better soon too!! Xoxooxox Sonya lots of allergies tests have been done.....and we stay away from all of them, don't help at all! Xoxoxoxooxox hope you little one is well! Xoxox

  6. Loren I want to hug you like NOW

    I so feel for you, Mimi can talk that much but her grunts are almost words and I know they say the same thing Kline says :(((

  7. Hi Loren,
    Someone linked to this blog on a Facebook Natural Mom's group. A lot of the women have children that suffer from severe eczema, and most SWEAR by this cream. Apparently they used it 3-5 times a day until it was under control, and then 1-2 times a day after that. I don't know if it will work for you, but we were gutted to hear about your poor son. Anyway, you should be able to buy it at Sprouts (formerly Henry's) or you can get it online at Amazon. Best of luck to you guys on your journey!!!

  8. It's called Shikai Borage Dry Skin Therapy Pediatric Lotion in case you didn't want to click on the link :)

  9. Loren, this is heartbreaking to read. We went through the same thing with my daughter. We are now in the 9th month of being off of all steroid creams. I thought I was losing my mind when we were going through it. No child should have to experience TSW. She is 100% healed now, but it was HELL to get here. Topical steroid withdrawal is HELL - words do not describe it. Keira used to cry and say that she wishes I was an octopus so that I had enough arms to scratch and tickle with.She begged me not to fall asleep because she couldn't sleep - I was EXHAUSTED beyond words. She always asked why her sister didn't itch, but she did all the time and when it was going to stop. It will come to an end my friend. Hang in there. You are an incredible mother and sweet little Kline is a courageous little boy!!!xo

  10. I went through days like the ones you are going through... Thankfully those days came to end and my daughter has been well for almost five years now. I hope your difficulty comes to an end... when my daughter was sick I was afraid it would never get better... Had I known it was going to get better I probably would have been able to deal with it better. Most likely your beautiful son will get well too. We went to a homeopath in Laguna Hills, California named Robert Abel. It took a while, but she did get better.