About 6 weeks off steroids, I think????
Kline's angel came all the way from England! Her name is Kelly and she has a son who is going through topical steroid cream withdrawal. I posted on the eczema support Facebook page begging for help and who should appear but our British angel Kelly! she said "Have you heard of red skin disease" (can't you just hear her adorable accent?). Well no, I had not since none of Kline's doctor either believe in it or support it.You may be asking " Loren, what did they support?" Well, I will tell you, more steroids, higher doses and more applications a day! Even though they were no longer doing anything for his "eczema"....his body couldn't get enough of it!!!!
His body need the crack cocaine, which just happened to be in the form of topical steroids!
I Googled RED SKIN SYNDROME, right away and in a second I knew this was our answer, UK angle Kelly had saved our lives! All of those fantastic steroids (sarcasm) I had been lathering all over my son since about 4 months old where turning against him! Killing the largest organ on his body ,his skin. The organ that is supposed to protects him from all of the crazy ass allergens and chemicals that are everywhere in our environment, yuck!
I called my mom right away, woke her up to get online, in a few seconds she too knew this was it! Then my dad, yep, no question about it, red skin syndrome all the way. I got Dr. Rapaport's number in Beverly hills and called first thing in the am...he said he would come in special for us on Friday,(his day off) just 1 and 1/2 weeks after I had learned of this terrible , unnecessary curse, we would be talking to THE MAN!!!! The one dermatologist that doesn't just keep pumping your baby with roids!
As we wait to fly and see the dr., I have met other amazing angels...mothers that have been through this hell with their babies and are proof that they will get better once the withdrawal is over. And a mother so close, 30 miles to be exact, that has a son who went off steroids close to the same time as kline.....who is suffering terribly.....someone who knows what it is like to see their baby rip apart their skin and not be able to enjoy life like a normal kid does, or should I say, a none steroid addicted kid does!!!! These women are my new tribe...we are the warrior mama's and watch out topical steroid cream, we are here to kick your ass!!!!!! Hopefully, we will convince Doctor's around the world, that this crap should not be used!!!!!!!!
If you are using steroids or know someone who is please stop!!!!
FRIENDS DON'T LET FRIENDS USE STEROID CREAMS!!!
Thank you UK Kelly, YOU KNOW WHO YOU ARE, YOU SAVED OUR LIVES!!!!!!!!!!!
XOXOXOXOXOXOXOXOOXOXOXOXXOOXOXO
Watch out Steroid abusing Doctor's and pharmaceutical companies, I am coming for you!!!!!!!!!!!!!!!
Itchy Kline's mommy!
Loren
xoxoxoxooxoxo
Withdrawal fast all of our red skin friends! xoxoxoxoxooxoxoxx
Love today's post! My husband and I feel the same way about Kelly. In fact, he is like me and would love to one day be able to travel to England just so we could meet her and her boy (and the rest of the fan, too!). She has given me more support than she is aware of. I look forward to going to her blog just hoping that she has written a new post! Her humor helps me during these dark hours and I fin it sad, yet comforting in an odd way, how familiar her stories are to ours because I feel validation that it wasn't just me and my boy that have gone through this... it wasn't just me and my boy that have had our experiences with more than one or two 'Jules' in a search for a cure, as well as it wasn't just me and my boy that have been made to feel like the worst mom ever and not doing enough and that is why our boys are the way they are. It is also comforting to see her boy, and although he still has a ways to go, to see how much better he is and that we CAN get through this hell!!! I am so glad that she found you, Loren! I am so glad that we can all be each other's angels!
ReplyDeleteI am looking forward to meeting you and little birthday boy soon! We are all going to get through this together!!!
I hope you have an amazing day. Like I said, when I first found Dr. Rapaport's article, for the first time in a very long time, I finally had HOPE! This road of withdrawal is a total bitch, but one day it will be done!!! Had we not stopped the steroids, each day would be a bitch for the rest of my boy's life!
Hugs and LOve!
Jill
I'm glad you found Dr. Rapaport. My name is Farah Rahim, co-founder of Malaysia's largest Facebook support group for atopic conditions (asthma, allergies and eczema) whose members comprise of adults and parents to children with atopy and some of which are going through TSW
ReplyDeleteI blog at http://x-cemamama.blogspot.com/
I will check you out!!!!! Thank you! Xoxoxox best of luck
DeleteAhh you two have brought tears to my eyes! I truly hope that one day we will get to meet, and compare notes on the frankly bonkers things we have done to 'fix' our poor babies. We will look back and laugh, eventually.....probably in quite a while!
ReplyDeleteWell that is it then a trip to Europe it it!! just need to win the lotto, do you have one of those over there? :-) xoxoxoxoxx
DeleteI hope this works for you! I agree that steroids were not the answer for us. We tried them multiple times when our son was a bit younger. Each time he'd take the mandatory break his eczema would come back 2-3x worse. The Dr's answer? Stronger steroids. It was frustrating. Then we did an elimination diet followed by a food challenge to determine that many food allergies were triggering our son's eczema. Stopping the steroids were not enough for us - he was reacting internally and externally to many things. Food, detergents, heat, stress. And we had to start giving him a natural immune balancer and some homeopathic drops. Now he's 95% better, but each spring his skin gets way worse - gotta love spring allergies.
ReplyDeleteAnyway, that's our story. I hope you find all the answers for your son. It's a long journey, but the end results can be amazing. Good luck!
Jennifer
http://itchylittleworld.wordpress.com