This consumes me and helping others

This weekend we were visiting with some neighbors.  One neighbor is expecting her first grandchildren- twin girls.  As we sat and talked about the sale cycle of Gymboree and Carter's coupons, she said she was consumed with the twins.  They are all she can think about.  I just paused and looked at her.  I said, "I know, Bo's skin consumes me.  It's all I can think about."

During the last 15 months he has been itching, oozing, scratching, crying, and shedding some days non-stop. Most people in TSW have to take a year or more off from work.  Many parents have to adjust work schedules so that one parent is always home with the child going through TSW.  We are very lucky.  Bo has a wonderful daytime caregiver, who has fully supported us and cared from him during TSW.  Ms. Pam is a God sent!

So you may be thinking, "How did this happen?"
The long and short of it is that Bo had a small spot of eczema on his cheek.  He was treated with a low dose hydro-cortisone and it would not go away.  In fact, his eczema spread.  We were referred to a dermatologist who put him on stronger steroids.  On these medicines, his skin only worsened.  Looking back, I don't know why I didn't suspect the steroid creams.  Mostly because EVERY doctor (3 derms and 4 allergists) all said they were the only treatment.

We stopped steroids in March of 2013.  The past 15 months have been really hard.  Bo has trouble sleeping.  I've found from researching that it is probably because the body produces less natural cortisone at night.  He has an intense itch that can not be stopped.  Because of this, he scratches himself until he bleeds.  Therefore, he wears footed pajamas most of the time.  We have had a huge break through in the last month because he is able to wear pants and short sleeves.  During itching fits he begs for his pajamas.

His goes thought what are called flares in the TSW world.  This is where he itches, sheds and oozes more intensely than other times.  He is never 100% comfortable, but he has better times than others.  In the beginning, his flares were almost all the time and all over his body.  Now he flares every few weeks, and his flares are localized to his face, neck, and legs.  His arms and trunk are mostly healed.  During a flare, his only comfort is to be held and rubbed or scratched.  ALL THE TIME.  This is where we are so lucky to have Ms. Pam.  When we are at work, she holds and scratches him.  A true labor of love.  At home, we have sacrificed many things to sit and hold him.  Dinner goes uncooked, floors go un-swept, we go without sleep and Kate has to be very patient.  Many times as I'm scratching and rubbing, I'm also researching.

Here is the major problem.  This condition is not recognized by 90% of dermatologist.  However, It's very real.  We've lived this nightmare for 15 months and counting.  I am in a facebook group with 1500+ members, all suffering from TSW.  Another group for caregivers has 600+ members, not all the same and the 2000 member group.  The ITSAN forum has 2000+ members and is growing at the rate of 5 members per day.  Doctors continue to prescribe steroids and give off-label instructions.  The inserts clearly state that the drug should be used for only 5-7 days.  People are using them for years.  My pediatrician was the only doctor who properly warned us about the use of steroids. Still, he had no idea that the skin could become addicted and cause this type of withdrawal.  The other doctors we saw assured me they were safe.

We used topical steroids for an 18 month period.  Some people in the group were addicted in as little as 10-11 doses of OTC cortisone.  These drugs as not harmless!  I am currently working with a group of mothers to hopefully bring awareness to these side effects.  We are not ready to release our action plan yet, but I hope it will change the treatment of eczema for other children.

The past few days have been especially emotional.  Bo is registered for Bible School at our church this week.  I'm not sure that he is going to be able to participate.  He is very uncomfortable when we are not around.  I'm not sure if it's separation anxiety or if he is afraid he will itch or hurt and others will not know how to care for him.  Either way, it makes me a mess worried about him.  I really want him to go and be successful because I have signed him up for preschool in the fall.  He needs to be with other children his age and get used to being part of the group.  I pray that he will heal enough to experience VBS and preschool.

Also, I think the stories of others are taking a toll on me.  When Bo was so sick, all we did was function to make it from day to day.  We slept very little (and still don't sleep some nights) and literally just made it through the day- one day at a time. The only way I have made it though is to keep telling myself, this is not life threatening, he will heal, it's only temporary, he is too young to remember it, and other positive self talk. I feel that this journey is one that needs to be shared and that I need to help other moms.  Prevention is the ultimate goal, but support for others suffering is also a priority.  As I read the desperate posts of other moms, it breaks my heart knowing what they are going through.  Emotionally, I may have been better off when I thought we were alone.  On a positive note, I have made several friends through this.  We chat on the phone or facebook about symptoms, remedies, and how to help others.

At this point, we need prayers for Bo's healing, guidance for the mom's group (for change and support), and strength as we finish this long fight.  Also, if you know anyone that you think is going through this, please let me know!

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!

History of Bo's Condition

This is an excerpt for an e-mail to Dr. Rapaport in July of 2013.  It outlines the history of Bo's Topical Steroid Addiction.

History of Bo's condition-

At about 3-4 months old Bo developed a fine rash on his stomach and back.  We used moisturizers to help it. Eucerin and other OTC lotions marketed for eczema.  At about 6 months his face began to break out.

First eczema on cheek and eyebrow

We used the same lotions and Aquaphor.  At that point the pediatrician prescribed a cortisone cream and changed his formula to Alimentium (sp?), Bo's eczema worsened over the next few months.  When he was about 11 months old the pediatrician ordered blood allergy test and a soy allergy was detected.  We began to feed him a soy free diet.  We also took him to a dermatologist.  The derm prescribe Desonide and Fluocinolone body oil. Bo's body cleared, however his face got increasingly worse.  All of this also corresponded with him weaning from breast feeding at a year old.

When he was about 18 months old (October of 2012) we were referred to two pediatric derms.  One at Emory had a 4 month waiting list .  I made an appointment for January of 2013.  With the other ped derm, we had an appointment at the end of October.  We also began seeing an allergist about this time.

Steroid withdrawal, October 2012 (I didn't know it.)

The pediatric derm (Caputo) continued topical steroids and prescribed Flopred orally.  Bo's eczema cleared significantly with the Flopred.  However, it returned quickly and worsened.
At this point blood work showed no allergies and he was given allergy prick tests for common food and environmental allergies.  He was also given a fresh food test to milk and soy.  All negative.

We saw Dr. Spraker at Emory in January 2013.  She said it sounded like "typical eczema".  At this point we had applied topical steroids for almost a year, visited 2 allergist and she was our third Derm.  I knew it wasn't "typical eczema".

Our ped ordered more test to rule out a genetic iron disorder.  Everything come back in the normal range.

In February 2013 we saw another allergist who put him on a food elimination diet.  He ate only pears, apples, green beans, broccoli, chicken, beef, white rice, and potatoes for a month.  His skin did not look better.

Bo also developed a fungal infection in his scalp and was treated for that for 7 weeks in February/ March.

In March I began looking online and found your work through Kline's blog.  I showed a YouTube video to Dr. Kim and Tanya.  I took Bo off all steroids in March 2013.

His skin looks better, but has some places that are bad.  He itches constantly.  He is also shedding.  He hasn't slept through the night since he was about a year old.

The social impact- older children always ask what is wrong with him.  Several moms have even taken toys from their children because Bo touched them and they fear he is contagious.

His sensory well being- I worry that the constant itching/ burning will cause sensory issues.

Long term impact of meds- the anti fungal medication is very dangerous, along with prolonged steroid use.  In addition, the anti itch causes dry mouth which is a concern for his oral health.

Also, we bath him with Dove sensitive skin soap, use dye/ scent free detergents, and moisturizer him with Vaniply cream.  Currently we are using Epsom salt baths.  We have used bleach baths in the past.