Tuesday, March 31, 2015

The Darkest Time

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

After the GAPS diet, we got to some sort of normal for a while, but still never enough sleep.  I was applying topical steroids very sparingly and still only using coconut oil instead of the Vanicream we'd had success with before GAPS.

Just before Penny turned three, we bought a house.  She got worse after the move, and I tried to figure out why.  Stress?  Food?  I reread every package in the cupboard and sent emails to verify ingredients.  Nothing really helped.
During the summer, she got even worse.  She woke up in the night, ripped the socks off her hands, and clawed at her wrists.  I gave up putting socks on her hands at night and just let her scratch because I didn't know what else to do.   We spent so many nights on the couch, me dozing while she watched Little Bear and Daniel Tiger until she finally crashed on my chest. 

A recent episode of night terrors
that brought back memories of
spending every night this way.
She ran around the backyard with legs that were bright red.  She sat on the floor digging at her ankles like she was going for the bone.  Her scratching always had this half-crazed intensity that every eczema parent knows and fears.  I gave up even trying to stop her because there was nothing I could really do to help. 

I constantly worried about infection.

In my desperation, I started searching for more information online and on Facebook and found lots of groups, blogs, and sites about Topical Steroid Addiction/Withdrawal (TSA/W) and Red Skin Syndrome (RSS).  According to itsan.org (International Topical Steroid Awareness Network):

Regular use of topical steroids causes the body to develop a dependency on the topical steroids. Once this happens, the rashes that appear are actually Steroid-Induced Eczema and signify the beginning stage of Topical Steroid Withdrawal.

And this frightening description of TSW:

During a flare or cycle of TSW, your skin may experience an increase in one, a few or many of these symptoms: redness, sensitivity, intense itchiness, hives, cracking, swelling, or oozing. When this happens, your symptoms may continue to increase in severity for a period of time. Your skin may also seem stuck in a “holding pattern” of bad skin or at a plateau without improvement for a period of time.

Flares can last anywhere from a few days to several months. When a flare eventually subsides and you enter a break, the skin becomes dry and flaky and you may shed a lot of dead skin. During a break, your skin may also feel tight, like plastic, or very rough. The redness may decrease in some places and oozing may decrease as well. You may be somewhat less itchy during a break.

I read blogs by people too sick to go to work or school.  People enduring flares that made what Penny'd been through so far seem mild.  I felt nauseated as I wondered if this was the only way out of the dark place we were in.

The ITSAN site showed so many pictures of former sufferers who emerged from TSW with clear skin.  But blogs and forums I skimmed started to tell a different story. 

People suffering for years without relief.  Eventually wondering if they needed to cut out gluten or dairy or try a different moisturizer or another supplement for their skin to finally heal.

I've been there before, I thought and remembered our GAPS diet days.  Apparently, some people find relief eventually this way, but others end up on a road that just keeps stretching farther and farther in front of them with their destination just out of reach.

Also, according to ITSAN, even after TSW a person may still have eczema:

It is difficult to find out if you still have true eczema before you are healed, because eczema-like rashes occur during Topical Steroid Withdrawal and can appear anywhere on the body – even far from the original site of topical steroid use, because the skin is one organ. Additionally, during TSW people often react to more allergens/irritants than what they are truly allergic to, so testing for the cause of eczema will not be useful. If you do have eczema once TSW is complete, it will be much easier to manage and less severe than the full-body rashes experienced during TSW. You should also be able to determine the cause.

If we embarked on this path, how would we ever know when TSW was over and what was "just eczema"?  This reminded me of the detox-or-reaction dilemma from our GAPS diet days

Furthermore, Penny's whole body was covered in eczema before we ever used topical steroids.  The most the TSW path seemed to promise was returning to where we started (unless we went through the whole process and learned she had grown out of eczema at some point). 

That's when I stumbled upon the blog of someone who had been to National Jewish Hospital.

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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