Where are we now, 15 months TSW

First of all, blogging is not something I think I am good at.  I am only doing this to spread the word about TSW and hopefully prevent other children from suffering like Bo.  I'm sorry this is not a pretty and cutesy, buy honestly, this is not a pretty topic.  I hope I can at least pique your interest enough to read the whole post and tell a friend.  


We are currently in month 15 of TSW.  We stopped using steroids in March of 2013.  Bo is about 80% healed with his face and legs being the most stubborn areas.  The last 15 months have been very difficult, to say the least.  Each day, we anxiously wake up hoping, praying that it is the day he is healed.  On most days I do truly believe that he will be healed.  The road has been long, full of sleepless nights, tears, prayers, ooze, shedding skin, itching, burning, scratching, rubbing, and questions from everyone.  I don't mind answering questions, especially if the person is truly concerned.  Here are some common questions with the answers.

How did we find ITSAN?

Bo suffered from eczema from 6 months to 2 years old.  It increasingly got worse with each passing week.  We sought the advice of many prominent doctors in the Atlanta area and none seemed to know what was going of with his skin.  The one that we held out as our last hope at Emory proclaimed that he had "typical eczema".  Throughout all the visits and prescriptions for stronger steroids, my mama gut was yelling "NO!"  I knew it was not just eczema and something was spiraling our of control.  After the much awaited appointment at Emory, I began praying and searching for the answer.  On day, I went into my office and cried and prayed.  I asked God to please lead me to an answer for this baby's healing.

Obviously, I had conducted many Google searches in the past.  I even used my university library privileges to search medical journals for answers.  This time was different.  I Googled "severe facial rash".  For some reason, I clicked on images.  Until this point, I avoided blogs and personal stories because I wanted the medical facts. (Rolling my eyes at myself!)  As soon as I clicked on images, little Kline's face popped up.  I looked at several pictures of his little body and clicked to read his blog.  As soon as I read the words Loren wrote, I knew I had found the answer to Bo.  I clicked on ITSAN and the opening page asked a list of questions similar to, Have you tried everything to cure your eczema?  Have you been on elimination diets, removed pets from the home, tested for allergies, removed carpet, tried every cream on the market... if you answered yes, you may have steroid induced eczema.  I continued to read and watch the videos of Dr. Rapaport.  I knew I had our answer!

What is the difference between eczema and steroid induced eczema?

There is more information about this in the ITSAN Q and A page, but for me it was not typical eczema because we were "chasing" it.  It began on his trunk and spread to his face.  Before we stopped steroids, he had spots that would not clear on his face, knees, feet and fingers.

These pictures were taken in March 2013.  He was on Dermasmoothe Oil on his full body and Desonide 0.05% on his face.

Have your tried Aveeno, coconut oil, shea butter, Crisco...?

Yes, yes, yes, yes, I really do appreciate people's concern, but yes if it is sold on Amazon, or in Publix, CVS, Walmart, or Target and is marketed to help eczema we tried it.

On this topic, many of the products marketed for eczema contain steroids.  Baby Isaiah became addicted in 10-11 applications of OTC hydro-cortisone. See his blog link for more details.

How long will it take for Bo to heal?

This is the million dollar question.  We wish we knew.  We did consult with Dr. Rapaport and Bo is taking longer than he predicted.  I personally feel that the long withdrawal is due to using Dermasmoothe oil.  This is labeled as a weaker steroid and was prescribed to us to be used from neck to toes to keep Bo's body from breaking out.  It worked for the most part on his body, but it is stronger than originally thought (again my opinion).  There is currently a mislabeling and false advertising law suite against the pharmaceutical company.

If I can't use topical steroids for eczema, what should I use?

Dr. Rapaport has been practicing dermatology for 40+ years.  According to him (in a video on youtube) eczema was a short term problem that children often grew out of until the first line of treatment became steroids about 35 years ago.

Therefore, I say, wait it out.  These things have helped other moms I have met and we have used some-

Dye Free/ Scent Free detergents

Dove Sensitive bar soap

Cotton clothing

Vanicream or any other moisturizer the child can tolerate

Apple Cider Vinegar baths (1 cup in a full tub)

Probiotics

Elimination diets

Wet and dry wraps 

Zinc cream (diaper cream)

Oatmeal baths

Epson Salt baths

Dead Sea Salt baths

Basically, read all labels and be sure you are not applying steroids, especially as a first line of treatment!

If you or someone you know may be going through TSA or TSW, please check out ITSAN.org.

Thanks for supporting our journey!