Saturday, May 10, 2014

Topical Steroid Withdrawal {7 Months In!}

It's hard to believe that we've been going through TSW with Noelle for 7 whole months now.

A few months ago, it was hard to see ANY light at the end of the tunnel.

We felt like she would just be miserable forever.

Well, I'm so grateful to say that we've had some great improvements this month!

We've also had some extreme lows.

Early this month Noelle's sleep too an awful turn.  She has consistently been waking in the night for months now, but a few weeks ago she could. not. sleep.

And, therefore, neither could we.

It was so awful, we've never experienced anything like it before as parents.  Nothing has tested us like that long week or so.

She was so awfully itchy, angry, inconsolable, tired, yet restless.

There was a series of events that compounded her condition that included:
  • Accidentally taking doses of Zyrtec instead of Benadryl (mom and dad's fault - we felt terrible, but thankfully she had nothing close to a serious overdose)
  • An asthma attack (never had one or been diagnosed with asthma) due to allergies
  • Petting a cat with her gloves on, which I think she's allergic to...And then keeping those gloves on...and itching her whole body with them all night.
  • Wearing a brand new dress and gloves to church without washing them like we normally do
  • Getting some type of virus that gave her a fever for 2 nights (only at night), swollen glands, and a red throat.
All the above happened in a matter of 4 the same time that she wasn't sleeping.

And when I say she wasn't sleeping...I mean she slept maybe 2-4 hours at night before finally crashing at 5a.m. or so.

During that week I tried a few new things for her skin on the recommendation of other moms with kids going through Topical Steroid Withdrawal.

First, we tried dry wrapping.

After her bath, I covered her skin in the lotion bars that I make.  Then I covered her legs and arms in gauze and taped it in place.

We found that this really helped with her itching and protected her skin from those pesky itching fingers.

However, each time we removed the gauze, her skin looked worse.  It turned oozy when it had looked smooth before.  This confirmed for us that her skin just does much better WITHOUT moisturizers.  

We DID find, upon someone's recommendation, that zinc oxide DRIES UP her ooze!!!  Nothing has worked that quickly before!

So we do use organic diaper cream with zinc oxide in it when her skin "weeps" or "oozes."

So since the dry wrapping didn't work, we then tried WET wrapping.  

After a bath, or anytime she was real itchy, we'd just wrap her legs in cold wet cloths.  I used old cut up t-shirts.  She HATED being wrapped, but we could tell that it did sooth her skin when it was hot and itchy.  

However, wearing those wraps at night, and putting her dry pj's over, caused her to start wetting the bed again.  I think the wet feeling on her legs threw her off.

So we stopped using those at night, but we still will wrap her legs up if her skin is angry, hot and itchy.  She still hates being wrapped but it cools the skin and really soothes the itching!

However, for that week, we still couldn't find help for her sleep.
She was in a very bad place.  Chris and I struggled to keep our cool at night and many times we failed.

But praise The Lord, His mercies are new every morning and He always granted the strength to get through the next day!  (Our laundry sure piled up though!)

Noelle however was not herself even during the day.  The lack of sleep and the itching really got to her.

What was so confusing to me was that her skin really had turned a corner.  Her legs had been so horrible for a few months with no improvement.  We are seeing that how the skin LOOKS, does not always correlate to how her skin FEELS.

So after a few days of this, we were able to get her in to her holistic pediatrician.

He believed that all the variables listed above caused her skin to flare and her behavior to be so challenged.

He also reminded me that any virus will cause the skin to flare.  Her body is working so hard to heal her skin, but if her immune system has to work at fighting off some other virus, her skin gets put on the "back burner."

He really wants her to be sleeping better, so he prescribed Atarax.

Oh, how we are thankful for that!!!!

It took us a couple days to actually fill the prescription and we are so glad we did. 

The first dose gave us the first full night sleep in several days.

We have since discontinued the Benadryl as we don't really see it helping her.

Currently, Noelle is only taking the Atarax at night for sleep.

She still usually wakes at some point, but it much easier to console and get back to sleep than before.

As far as her skin goes, here is where we are at:

Her legs have been the worst part of her body for a couple months now.  But I've seen them fully "cycle" now.  I've mentioned it before, but it basically means that after looking so ravaged, bloody, scraped, and oozing, they need to dry up and completely flake off.

Her legs were just taking forever...they were stuck in an oozy, bloody, scraped and torn up state.  And then they finally dried up and flaked off!!!
Looks SO much better!!!

Praise the Lord!  

That may not sound like a praise to most...but to those who are going through feel me :)
This is where she's been rubbing/itching

Now the skin on her legs is still super thin.  So if she itches them without her gloves on, she'll definitely break the skin.  But now that her legs have "cycled," they heal up much much quicker.

They'll look awful (like today) for a couple days, then dry up and flake off again!

The tops of her legs are looking more affected right now.  They went from red and inflamed last month to scabbing this month.  I'm hoping that means they will "cycle" soon as well....dry up and flake off!
The foot on the left is dry, the right one has Tender Tush applied

Her feet look the same as her legs, but still more red.  They seem to be in the same stage as her legs most of the time.

The rest of her body is pretty mild...compared to before.
Happy Girl!

Her face has cleared up nicely...just dry flaky patches around her chin that she keeps picking.

Her neck and shoulders are not as bad as last month.  They're still pretty itchy, but not real least not today.

Her tummy has red bumps all over...hate the look of it, but it doesn't seem to be bothering her and I know that it'll clear up again soon.

Her back is flaking again.  It cycles at least once or twice each month.  Right now there's a bunch of tiny scabs that are drying up.  Not real bothersome to her right now either.
Left hand has Tender Tush, the other is dry

Noelle's arms continue to be mild.  When she itches, they'll quickly become red and the skin still breaks easily.  But will heal up pretty quick and overall they look really good!  

I'm so relieved to have some improvement.  Others are noticing as well...her skin's improvement AND her behavior's!!!

Her behavior almost always directly correlates with the severity of her skin.  She's also getting sleep now, so that always helps a 3 year old :)

We're thankful to have our Noelle back for most days.  

Her sleep still isn't perfect and she still usually wakes up, but we're also noticing better night sleep when she DOESN'T nap.  That girl loves her naps...and so does mama ;)

But if it means better night sleep, I'm willing to push through till bedtime with no nap!

I mentioned in my last post that Noelle had allergy testing done.  Her pediatrician (NOT the holistic one) kind of freaked out at the results and referred her to an allergist.

We saw him a couple weeks ago and he is really no concerned about any of the allergens except for the dairy and peanuts.  A few of the others he things she might be sensitive to, but those that gave such small results probably aren't true allergies.

He explained that because her IgE was so off the charts, it throws off the results.

A normal person's IgE is around 100...Noelle's overall was over 2,000!  So having her response to oats being 7 is probably not a big deal for if a normal person who has an overall IgE of 100 and their test results show the same, that would be a different story.

It made sense to me and I was relieved that she probably isn't truly allergic to absolutely everything!  However, people with eczema generally have higher IgE readings...and those going through TSW are even higher I think.

So we're still refraining from peanuts, she already wasn't having dairy, and we are still not giving her gluten or corn in an attempt to help her gut out.

So IF there's any TSW parents reading this, let me recap what is working for Noelle.  I've included some things not mentioned above.

  • Cod Liver Oil each morning
  • Just started Kefir - have to wait to see if it helps.
  • Vitamin C and D
  • Atarax at bedtime, and sometimes a second dose in the middle of the night
  • RutaVaLa essential oil at bedtime for sleep
  • Organic Aveeno diaper rash cream with zinc oxide for ooze 
  • Young Living's Tender Tush for itchy, painful, or broken skin
  • Cool wraps (no moisturizer) on legs and arms when hot and itchy
  • Cotton tights on legs to protect the skin at night...considering covering her arms as well.  She will sometimes remove her gloves to scratch!  Ick!

So that's where we're at.

Praising the Lord for small victories, and the sanctification He has brought from the deep lows.

Looking forward to more improvement!!!


  Disclaimer: I am not a doctor or medical professional.  I simply make decisions on how to care for and improve the health of my own family.  None of the statements on my blog have been evaluated by the FDA and any products mentioned are not intended to diagnose, treat, cure, or prevent any disease.
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