The LONG history of a little girl and her “eczema”

This journey all began when my beautiful daughter was 5 months old.  She had a few areas on her body that had small raised bumps.  They were in the crook of her elbow, on her wrists and behind her knees.  Being new parents, we rushed to the pediatrician who said it was eczema and not to worry, this is very common.  He prescribed Elidel Cream.  We were thrilled that it was common and went on our way.

At 8 months the pediatrician informed us that Elidel had warnings about use on babies so we stopped using it.  He prescribed Aclovate and told us to use it for 5 days and then stop for 7 days and to use it again if the rash comes back.

And so our steroid journey began.

When she was 18 months old we were referred to a Pediatric Dermatologist.  Her skin was not really dry.  It was actually soft and smooth except for those small areas.  You couldn’t even see the eczema at this point, you could just feel it.  However, those areas were not getting better.  When we first saw the Pediatric Dermatologist he told us that eczema was “smart” and that it learns to know the medication and that the medication will stop working after a while so we have to switch to something else.  The use of the word smart should have been a red flag but we just trusted that the doctor knew what he was doing.  I remember thinking that it probably means that your body builds up a tolerance to the medication.  Addiction never even entered my mind.  The only thing we were worried about was thinning skin because there was no warning on the labels, or from the doctors, about topical steroid addiction.

Her skin was fine except for seasonal flares.  She lived a normal life.  She was extremely active, a natural athlete.  She enjoyed swimming, skiing, ice skating and gymnastics.  We live by the ocean so we spent every free moment at the beach.  Her eczema did not affect her life until she was about 6.

At age 6 my daughter started getting itchy eyes and she was often congested.  Also, her skin was getting worse.  We were sent to an allergist.  She tested positive for dust, trees and grass.  How the hell do you avoid any of those?  We took all stuffed animals off her bed.  Everything plush was cleaned and stored in ziploc bags.   I cleaned the curtains regularly, pulled up rugs and washed her bedding constantly.  Nothing worked.  Her allergies and eczema were getting worse.  Looking back, I realize that this is when the addiction must have begun.

We took her to several dermatologists and allergists who kept prescribing more topical steroids.  She was on hydrocortisone buterate, triamcinalone,, desonate, desonide, mometasone, steroid compounds, alclometasone, etc.  Except for 1 short dose of prednisone when she was 6 we avoided the oral steroids.  However she did have a nebulizer (from when she had walking pneumonia at about 3) and used budesonide a few times which in hindsight, is crazy, considering she does not have asthma!

Nothing was keeping the eczema away for more than short periods of time but she still was able to live a normal life.  She was doing really well in school and had a lot of really great friends.  She started surfing in the summers, was still ice skating in the winter and was on a competitive gymnastics team.  When she was about 7 1/2 years old things really started to get bad.  There were parts of her skin that never healed no matter what steroid was prescribed.  She now had eczema all over her body.  We were using Protopic on her face and different steroids all over her body.  Alclometasone was what we were using on the thinner skinned areas (wrists, inner arms, back of knees) and Mometasone was being used on her trunk, legs and arms.  They were not working.

I was spending an insane amount of time (and $) looking up cures, treatments and doctors on the internet but could not find anything.   We saw so many different dermatologists and allergists and they all prescribed topical steroids for eczema.  I kept telling the doctors that this didn’t look the same as the eczema that she had in the past and that I thought it was something different.  They all dismissed my ideas.  I was concerned that it was a new cat that my daughter got because she seemed to have more dander than our other cat.  We kept the cat away from her, went away to see if she improved, but nothing helped.

I should also mention that my daughter went from averaging in the 90th percentile for height to below the 50th percentile.  She also never sweat. Not one day in her life did I see sweat on her.  This was a child who had endless energy and never stopped running around, yet she didn’t sweat.  I brought both of these concerns up to every doctor and asked if they could be from the steroids.  I was told the steroids were not the cause and not to be concerned.

So we took matters into our own hands when my daughter was 8 1/2.  We did not refill her steroid prescriptions and stopped using them when they ran out.  Needless to say we were in for a BIG surprise!

About Junk Lover

I am a lover of junk. I love to craft and sew and re-purpose old crap. My mind is a scattered mess with too many ideas running through it so I don't always focus and get my projects done. BUT, I usually have fun trying.
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2 Responses to The LONG history of a little girl and her “eczema”

  1. Laura says:

    My son is in month 8 of TSW. He is only 2 1/2. It’s interesting that you mentioned her growth rate. He hasn’t gained a pound in a year. He also dropped from the 90th percentile to 25th. I’m sure it has impacted his growth.

    • tanddi says:

      I hope your poor baby isn’t suffering too much from this hell. It is scary how much damage steroids can do. From what I understand once tsw is over most of the children start to grow again.

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