Topical Steroid Withdrawal {3.5 months in}

I've really debated whether or not to start documenting Noelle's withdrawal.

I know I started sharing about her eczema...but now I'm really feeling like what we're dealing with is very separate from her eczema.  Only time will tell, but this is how we are handling Noelle's current situation.

We believe she is going through Topical Steroid Withdrawal.  If you are interested in what that is, check out www.itsan.org

Yes, she definitely has eczema.  But these are not eczema symptoms and her skin is not responding like eczema does.

From what I've read (and I'm no expert), TSW (topical steroid withdrawal) takes time, time, and more time.  There's really nothing that we can apply to her skin to make it heal faster.  
And there's also nothing that she can take to make the skin clear.

It has to go through the withdrawal.

We ARE, however still gluten, dairy, and now corn free as well with Noelle's diet.  They are all inflammatory foods and I want to rule out ANY other possible factors while getting her through this!

And sadly, this takes time.  The exact time varies for everyone, but for many, it takes 2+ years.  The symptoms appear in "flares".

Right now, Noelle is in her 2nd flare since cutting out steroids 3.5 months ago.  This flare is a long one.  

I didn't realize it was TSW at the time, so I didn't take note of when it started, but it's been probably a good month or so in this condition.

I know that I've got lots of posts these days with varied subjects.  But I have gleaned so much support from other moms going through this that I feel the need to document Noelle's progress.  And if for no other reason, I have it documented for future reference for myself.

And for those that care for Noelle (which there are so many ;), you can better understand what she's going through as you read along with me.

So right now, at 3.5 months, she is miserable, perky, sad, inconsolable, happy-go-lucky, and then back to miserable. 

She has major ups and downs.  Her temper is at its highest and we are really trying our best to be understanding of her.

Tantrums are not tolerated in our house, so they are still addressed and corrected, but we have to approach her from the right perspective.

I have read soooo many testimonials of adults going through what she is, and they are able to use such graphic terms to describe what they are feeling.  Noelle is not able to do that, and I think that's why it comes out in such explosive ways instead.

She wakes several times most nights (NOT the norm for our kids).  She is unable to explain what is wrong or why she is so upset...she mostly just needs to be close to Mom or Dad.  

Stroking her back is very comforting to her, but sometimes we don't even need to touch her.  Just being close is enough.

And other times, she forgets :)  And she is Noelle. And we love love love when we see our Noelley.  We appreciate those times as we know she has either forgotten that she feels so terrible, or she actually has some temporary relief!!!

All day every day isn't unbearable.  It's just something that is now part of our every day life.

So that's how she's doing, and here's how she looks.

The past couple days she has woken up with puffy eyes.  The redness has spread up her neck and to her chin.  

She has patches on the sides of her eyes now and mild ones on her forehead.  Her eyelids have become scaly again and are beginning to flake.

Her wrists have improved some.  She has a tiny little boil (what I think is a boil) on her finger.  I've applied Melaleuca on it multiple times/day to prevent infection and it's looking better.

Her wrists do not look as brutal as last week...but if she starts itching, it only takes seconds for that to change.  

She's actually been wearing gloves most of the time for the last couple days.

Her arms are much much better.  The crease of her arms are just a tad dry, thank you Lord!

Her back remains her worst irritant.  Not much soothes it, she can't stand to have air hit it.  I apply melaleuca on the spots that she has scratched as I do NOT want infection!!!  The melaleuca oil seems to be soothing to her. But it changes regularly...one morning it will look all read and inflamed, and the next it will only be dry and flaky.

Her stomach is covered in red inflamed blotches, but they don't seem to bother her much thankfully.

Her thighs are also covered with the patches, but are not irritating her.  If her clothes are off, she'll itch them for sure, but as long as they're covered, she doesn't complain.

The backs of her knees are still pretty awful.  They aren't as painful as they were though.  They are bright red and sometimes shiny.  They are very very smooth as I think this might be fresh skin?  They were literally shedding skin last week and this week.  Very very flaky skin there but now it seems smooth...or raw, not sure which one :/.

Shed skin on the inside of her pants.

She does have a few tiny pimple looking bumps behind one of her knees.  Boils are very common with TSW, so I'm wondering if that's what they are.  I'm keeping an eye on them and applying Melaleuca frequently.

Her feet are the worst.  She's got elephant skin there (also a common symptom - extra skin that folds and wrinkles just like an elephant's) and they still look chewed up.  If she gets a chance, she can scratch those puppies till they bleed.  So I'm doing my best to keep her from them and keep them covered.

Her skin is extremely thin as well and seems to be easily bruised.

We are currently not applying all the topical creams and ointments that the doctor gave her.  I am only applying what feels good to her, and right now that is Melaleuca essential oil, sometimes Lavender, and following with Aquaphor.  It is petroleum based, which I'd rather not use.  But right now I'm just using whatever feels good for her!  And it could change tomorrow!

We are continuing with the supplements as I DO believe there is much to be done to heal her gut.  But I am not convinced that her current skin condition is the direct result of solely that....once we're through the withdrawal, we'll see!  This is a learning process, so time will tell!

Now that I am documenting it, I'm realizing that her skin actually has improved since last week....or at least since a few days ago. 

But the more I read, the more I also realize that it can change very quickly and for no apparent reason.

We have a long road ahead of us, and I hope to one day be able to look back at this struggle as a memory and no longer a present reality.