Stop topical steroid abuse!
Wednesday, July 25, 2012
Another red skins mom's feeling about her baby girls and her scratchy monster!
When I first read this post by another mom I jnow that's daughter had what they though was uncontrollable eczema, turned out to be steroid withdrawal, I balled my eyes out! It is exactly how I feel about Kline! One day my baby will be normal and the itchy bastard will be kicked to the curb! Here is her heart felt letter to her daughter!
And here is her daughter blog....ps she is now cured from her red skin syndrome! Gives me hope!!
http://scratchymonster.blogspot.com/
A MOTHERS WISH
"Every morning, I try to start the day out positive for my daughter's sake regardless of how much sleep we didn't get the night before. Today was no exception. I woke her up at 8:25 only 3 short hours after she finally fell asleep after the usual nightlong restless tossing and turning, scratching, crying, and scratching some more - already running late for her big day. I took my 3 1/2 yr. old daughter to her 'first' day of preschool today, telling myself she needs this - she will have fun. My husband and I want her to have a 'normal childhood'...we don't want her to feel 'different' from the other kids, but reality hit quickly as I watched in circle time, my daughter struggling not to scratch - pulling her pant legs up and scratching her legs until one bled, her back, her arms, the back of her neck as if bugs were crawling all over her skin. And as the other children took their long sleeve shirts/jackets/sweaters off as it got warmer, my daughter stayed in hers. My heart sank as the other little girls ran by to the playground in their little sun dresses and tank tops because it was warm out now, bare legs, no redness, no flaking, no peeling, no rashes, no itching. I looked over at my daughter in her long sleeves and pants still scratching, watching her trying to scratch a spot on her back as she watched the other kids run around - figuring out where she fits in in all this...and I know she'll figure it out. She's a smart kid - a sensitive one - and like most children, more resilient than we tend to give them credit for. As the school day started to come to an end for my daughter and we were getting ready to go home, we watched the other children getting ready for their nap time, eagerly pulling out their sleeping bags and pillows arranging them on the floor next to their little friends. My daughter looked up at me and asked why she wasn't taking a nap at school. I wondered to myself if my daughter would ever be able to take a carefree nap at preschool or even at home like the other kids - probably not. I don't wish for her to be the smartest kid, or the prettiest, or the fastest - I just wish SO much and pray everyday that just for one day and one night she can feel 'normal' - what it feels like not to itch incessantly, what it feels like to sleep through the night without being tormented by the Scratchy Monster and to have her skin burn and itch,what it feels like to climb into the bath tub without asking, "Mommy, is this going to burn?"....I wish I could trade places with her and take all this from her so she can be happy and carefree like children are supposed to be. This I wish for her."
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Loren, I am honored that you post this on your blog. It is even hard for me to read it myself without crying even though my daughter is now doing better and is 100% healed. When I read this poem, it takes me right back to that day in the preschool almost a year ago - I remember the smell of the classroom, the sounds of the giggling children as time seemed to stop around my daughter scratching - all the feelings that surrounded that day and the long drive home which was really only 7 minutes, but with an itchy/scratching, exhausted child in the back seat, it seemed like forever.
ReplyDeleteI do want to say that this poem was written almost a year ago, 2-3 weeks after I stopped using topical steroids on my daughter, just had discovered that there was a real skin condition caused by use of steroid creams called red skin syndrome. At the time, I still had my doubts to be honest, but am so happy and lucky that I stuck to my guns and followed through the withdrawal process. My daughter is coming up to her one year anniversary of being steroid free- she started preschool a few months ago - loves it! and she is so happy, healthy, itch free (has been since month 8 of being off of steroids). My wish did come true thanks to ITSAN and everyone's support helping me help her through TSW.
It was by far the darkest, most depressing road my husband and I ever took, to helplessly watch your child suffer and be tortured by itching and burning - TSW is brutal, but I would do it all over again seeing where my daughter is now at 4 years old- her skin is baby soft again, clear of all rashes and itch - something I never thought would ever happen - I don't even think her doctors thought she would ever be able to attend preschool, her skin was in such poor condition.
Red skin is definitely a real skin condition and it is so sad that it is just now being recognized by some doctors in the medical community. I cringe at the thought of how many other children are still out there like my daughter and Kline fighting an unfair battle - what parents believe is out of control eczema, when really it is topical steroid addiction or red skin. I hope and pray for Kline's steady progress on his healing path to a wonderful itch free life ahead of him! So much love and admiration to you - you are one of the strongest moms I know and I feel so blessed to now know you and Kline!
In case anybody wants to follow up on my daughter's topical steroid journey and experience with TSA/W- successfully coming out the other end of the itchy tunnel - I have created a blog (I hope you don't mind if I post it here): And I know Kline will be there soon as well - he has already come so far since day 1. We will be celebrating together :) Hang in there Loren! http://scratchymonster.blogspot.com/
ReplyDeleteThank you Kristina! You give us hope in our darkest hours! We love you guys and are so thankful for your support, encouragement, and most of all your friendship! Xoxoox Loren and Kline and Denny too! Even though he never reads my freaking blog! ;-) lol
ReplyDelete@Kristin and Loren
ReplyDeleteBoth of you are doing great and I hope that the children who have RSS or TSW will feel better soon. Btw, have you guys tried adding chamomile in their baths? I read that it's a good anti-inflammatory.
- internal medicine