Thursday, April 2, 2015

Learning from National Jewish Hospital

This is part of a series of posts about Penny's eczema story.  To start at the beginning, go here

As I was reading about Topical Steroid Addiction, I also found a Facebook group called Eczema Parents.  One of the first posts I saw was about a family who had been to a hospital in Denver called National Jewish Health that has an intense outpatient program for children with allergies, eczema, and/or asthma. 

I quickly devoured this blog about a little girl named Zoey who was not too much older than my own daughter.  Although ITSAN (International Topical Steroid Awareness Network) says:

The experts recommend quitting [topical steroids] cold turkey. Since every day off topical steroids is a day closer to full healing, tapering topical steroids may prolong the length of withdrawal.

National Jewish sends its patients home with plans to taper down the use of topical steroids by using weaker ones after the stronger ones and spacing out the applications. 

I weighed all this new information in my mind and finally decided that ITSAN's approach was not for us. 

I stalked the blogs of everyone I could find who had been to National Jewish and implemented many of the ideas.  One of the first new things we tried was wet wrapping, similar to this video:



Starting with wet wraps three times a day, Penny finally began to come out of the worst flare since she was a baby.  I was still too wary of the topical steroids though.  When I saw how well the wet wraps were working, I tried to stop the steroids abruptly.  She got classic Red Skin Syndrome symptoms--tight, red skin that caused her to scream while we tried to apply her lotion and get her into jammies. 
Penny in her wet wraps.
This was scary given everything I had just read about RSS, but I realized we couldn't just swap steroids for wet wrapping. 

We already had prescriptions for several strengths of steroids, and over time I managed to step down to her weakest prescription and even stop steroids for large parts of her body.

Stepping down steroids really should be done with a doctor's supervision.  Since we didn't have insurance then, I decided to try to do it on my own for the time being and to look into traveling to National Jewish after the first of the year when we would have insurance. 

Also, most doctors don't prescribe steroids to be used this way.  They usually prescribe to use the steroid for a certain number of days and then to take an equal length break.  This was our pediatrician's approach, and I wasn't sure if he would be able to help with a different method.  That said, I wouldn't advise other people to wing it like I did.

Playing at the park early in the morning to avoid the heat. 
You can see the bandages around her wrists to keep her from scratching.

At the same time, I made many changes to our routine based on what I read by parents who had been to National Jewish:
  • Using Benadryl at night to help her sleep.  We used this at her worst as a baby, but at some point her pediatrician didn't want us to use it so often.  But deep sleep is when the body repairs itself, which someone covered in eczema can't get but desperately needs.  A sedative also means less nighttime scratching and damage.
  • No playing outside when it was hot since heat and sweat are big eczema triggers.  (This was in the middle of an Oklahoma summer.  We usually see long stretches with highs over 100 F.)  
  • Keeping most of her skin covered to minimize damage from scratching and exposure to allergens and irritants. I began taping her sleeves down with medical tape over the fabric around her wrist.
  • Watching her all the time and "doing another lotioning" when she got itchy.  This meant washing my hands, washing the itchy area with a wet cloth in case an irritant was on the skin, and then applying lotion.
  • Switching from plant-based moisturizers like shea butter and coconut oil to Vanicream and Cerave. Vanicream for after bath since it was better at sealing in moisture and Cerave for between baths since it has ceramides which may help maintain the skin barrier.
  • Even after we started cutting down the number of baths and wet wraps each day, we still kept up with lotioning her at least 3 and sometimes as many as 5 or 6 times a day.
All my research paid off when one day Penny exclaimed as she got out of the bath, "Look at my skin!" 

So much clear skin!
What's not evident in this picture, however, is she still had many trouble spots I couldn't get clear consistently, which eventually sent me searching for more help.

Like I ended my last post, I am very happy for every person who has found healing.  I am simply sharing the mental process I went through when considering whether TSW was where the answer lay for my daughter.  I believe everyone's stories are important for others to read as they try to make these decisions for their own case.

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