Wednesday, December 10, 2014

Topical Steroid Withdrawal {ONE YEAR in!}

I seriously can't believe that I'm sitting here blogging about Noelle being off topical steroids for ONE WHOLE YEAR!

I've noticed a trend in our Topical Steroid Withdrawal online community of others tracking their months into TSW like we track our children's age...23 months in, 47 months in, 94 months in, etc.

Well, I'm already losing track of how many months Noelle has been off steroids and I am taking that as a GOOD SIGN!

I'm pretty sure we hit the one year mark in October, and my last update was a month before that and I was able to share how WELL Noelle's skin was looking!  She had a really amazing several weeks of healing....and then another flare ;)

So, many people would just be utterly discouraged with another flare up after such improvement, but I really wasn't.  Noelle has come SO FAR with her healing and I knew from the experience of others, that she'd have another flare - that TSW wouldn't just disappear, never to return that quickly!

So very shortly after my last post, she started flaring, and it lasted at least a good month-maybe a little more.  Right now, she's much better and everything is trying to heal...which, by the way, often times makes it more ITCHY!

It's frustrating, but just as our sores or wounds that heal start to itch, so does hers.

But this flare really wasn't nearly as bothersome as her others, so I'm very encouraged that even though her journey through this isn't OVER yet, she's most definitely better and on her way!

I've also noticed that her asthma has not been acting up hardly at all this past couple months...not sure if that's related or not.

ANYWAY, here's how her skin is!

Her face has been pretty irritated lately. It's been red and she's itched a couple spots until they've become raw.  If she's around an irritant, like dog hair, we find her face seems to react pretty strongly to it.

Her neck was also very red, bumpy and irritated through this flare, but it's drying up now!  Drying for us, means healing - much better than angry, red, bumpy skin!

Noelle's arms and legs were the worst part of this flare.  Right now her arms look almost normal...except for when she scratched her wrist this morning :(

Her tummy got a little red, but for the most part has remained clear for quite a while now.

Her back stays pretty clear as well, except she gets a lot of irritation where her pull-ups hit her.  She only wears them at night, and I really feel like TSW affects her ability to stay dry at night.  I say this because she was doing GREAT staying dry and then all the sudden she couldn't anymore.  She's actually doing much better, but pull-ups are safer than urine stinging her skin if she has an accident.

So her legs were pretty bad, though not NEARLY as bad as they were before, like in this post.  We didn't have much raw skin, just bumps, tough skin, and it was pretty itchy.  Right now, it is more on the dry side which tells me they're healing too!

Her feet used to be the worst part of her body, like in the post I linked to above.  They were just awful...I think I used to say they looked like they were chewed by piranhas.  And I'm so thankful to say that they really don't seem to bother her at all anymore.  We found that they're still sensitive - like she can't wear certain flip flops without getting irritation between her toes.  But other than that, they're great!

As far as her sleep goes, thankfully it continues to IMPROVE!!!  She wakes up once or twice and usually goes right back to sleep if we just stroke her for a minute.  When I got annoyed at that the other night, I just reflected on what life was like a few months ago...very little sleep like I talked about here.  So thankful that The Lord has brought her this far!!!

We have stopped giving her the homeopathic supplements from her doctor...I'm wanting to learn more about how those are made and what they really do...especially since she's now still improving without them!

The supplements she does take:
  • She still takes CALM magnesium powder at least once a day, sometimes twice.
  • She chews 1/2 pill of melatonin at bedtime as well.
  • We continue to give her probiotics at night and enzymes with her meals (when I remember).
  • She also drinks Cod Liver oil with her NingXia Red (drink from Young Living) and the Kombucha that I brew at home.
  • Also, she still is not eating dairy, gluten, corn, oats, and we do our best to stay away from other processed foods (high fructose corn syrup, artificial sweeteners, etc)

The best moisturizer for her is still our lotion bars (recipe here).  It really seems to soothe and help her, although we try to avoid doing it right before bed...for some reason that makes her more itchy?

I think that's enough for now...if you're a parent with a child going through TSW, I am so sorry.  This has been such a hard year for our entire family.  I pray that you will find what works best for your child and that perhaps our experience will help in some way.  I couldn't stop reading about other kids in Noelle's situation when we started this, and that's why I decided to blog about it!  I hope that you find what soothes and assists them getting through this awful experience!

If you are wondering if you have TSW, check out - it's a wonderful resource dedicated to getting the word out concerning this condition!

And for those of you who have prayed for Noelle's healing and our family's sanity during this time, we thank you!  If you're close to our family, you know how much Noelle has improved and started becoming more and more like herself :)

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