Topical Steroid Withdrawal {9 months in}

So we are now closer to being a whole year off of topical steroids!

Noelle has sure been through a lot these past 9 months...and so has the rest of the family as a result.

My last post regarding Noelle's skin was 2 months ago at her 7 month mark (read here).

At that point, we had finally seen some improvement!!!  In her 7th month, Noelle also went through a really bad week and a half of sleep...or the LACK thereof, but with some prescription medication and watching her foods more closely, she improved.

Well, it's hard to recap the last 2 months as she has seen so many different ups and downs.

She had a stomach virus several weeks ago and didn't eat for a few days....that made her skin look AMAZING!!!!  Clearer than it has EVER been with no redness at all.  However, it got red and itchy almost immediately after she started eating again.  

I did some research and with the help of some other TSW moms, found out that just the act of eating and how the body digests and processes food can heat up the body and cause itching to start again.

A few weeks later, her skin got another break....right before another flare :(

The roller coasters are hard because when we see improvement, we want to keep that momentum and just see her healed.  That hasn't happened yet, though and we are daily trying to figure out what helps and what hinders her healing.

A few weeks ago, Noelle took another bad turn with her sleep.  She is sometimes awake for 3-4 hours each night, with an occasional break of only being awake for 1-2 hours.  She will normally crash around 4a.m., but one day it wasn't until 5a.m.!  We usually will then let her sleep until she wakes up...sometimes after 10a.m.!

We think she might have built up a tolerance to Atarax, so we are taking a break from it and will only give it occasionally and see if those nights she does better.

She tends to sleep much better and more soundly if one of us is sleeping with her.
Having a rested 3 year old going through Topical Steroid Withdrawal is much better than an UNrested one!!


So Chris and I have been waking up sore because we're spending several hours of the night/morning in Noelle's bed, stroking her to sleep.

It's hard to understand WHY she goes through these rough patches (well...roughER than the rest).  We are being very careful with what she eats and doing our best to keep up on the supplements her doctor wants her on.

We just saw him again this week and he gave her another homeopathic remedy for allergies - food and environmental.  He also wants her to start taking Magnesium.  She has never been tested for it, but he said if there is a deficiency, the magnesium can really assist her skin in healing.
 
The itch is just really bad right now. 
It's kind of odd because her skin really doesn't look that bad!  My theory is that it itches more as it tries to heal???

Anyway, here is how her skin is doing right now.

I mentioned in my last post that her legs had just "cycled" for the first time and we were hoping to see quicker healing on her legs from then on.  We HAVE found that to be the case thankfully, but Noelle sets herself back when she gets a hold of her legs with no gloves on and scratches :(

 It doesn't happen often, but one time is all it takes.  She can make herself ooze and bleed in minutes if we aren't carefully watching.  She normally does this during naptime when I think she's sleeping.

 

So we have had some setbacks with her legs, and they are trying so hard to heal....and they would if Noelle would leave them alone.

Noelle's tummy and back are the same as they have been for quite a while.  They stay pretty clear until something irritates the skin.  Then they get red and bumpy, but usually clear up within a week.

Something really bothered her arms a couple weeks ago - I think it was dog dander/hair.  She scratched them like crazy one night when I put gloves on her instead of tights.  She took the gloves off :/

So we're trying to help her arms now as they are super itchy once she scratches them like that.  And it's taken a good couple weeks to get them back under control.

There are spots on her shoulders and upper arms that are thick and crusty right now.  But thankfully they don't itch too much.  So I assume they'll just clear up the more she leaves them alone.

Noelle has unfortunately really taken up the habit of "picking."  It's painful to watch, so I make sure to keep her gloves on 24/7 unless her hands are occupied.  But if she has the chance, she'll pick at her chin or cheek until it's raw...not because it's itchy, but because it's a new habit.  How nice ;)

Sweet Girl :)

Thankfully right now it's not bad as we've been diligent with the gloves.

She has a lot of redness and roughness on her entire face right now too.  Don't really know why...she's not itching it more than normal.

Her chest gets red occasionally but is not a big problem anymore. 

So after so much encouragement at her 7 month mark, I did expect Noelle to be doing kind of awesome by 9 months.  Sadly, she is not.  And to be honest, it's very hard right now.  She has at least a few episodes every day that consist of crying, whining, itching, begging us to hold her, and screaming at everything that moves with irrational passion.

We are really learning humility and unconditional love as the LAST thing I feel like doing to a cranky little tantrum-thrower is hold her.  But that's what she needs when she's like that and it calms her almost immediately.  I will confess that there are many times...probably daily that I truly forget she is like this because she is in pain and constantly itchy.  I convince myself that she is just being a bratty little 3 year old, and while there are plenty of times that is the case, I need to be more intuitive to see when she just needs comfort.

So PRAY for me!  This is tough and we are looking to the END of it!

I am, however still praising The Lord for what He HAS done so far.  And guys, if you haven't looked at this website, and aren't really familiar with TSW, please take a look.  It shows just how blessed Noelle IS to not have TSW as severe as most others do.

As hard as life is right now for our 3 year old, we are grateful that it isn't harder.

And we look forward to life being more normal for her in the future.  We see our chipper, happy, thoughtful, caring, and empathetic Noelle much more frequently than we used to.  But we anxiously await being able to put her to bed in comfy jammies without tights covering her arms and legs.

And we wait for the day when she doesn't look at her skin and compare the way it looks to the way other  peoples' skin looks.

It will come.



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.