Saturday, September 20, 2014

Topical Steroid Withdrawal {11 Months In}

So life has brought many changes these past couple months! It has made life busier and more gratifying!  But definitely less time to blog :)

My last TSW post was when Noelle was 9 months into this and we were pretty discouraged.  I really expected her to be in a better state than she was and she was really really itchy!  

Well I'm so glad to report that the last 2 months have brought Noelle MUCH improvement!  And consistent improvement which we are so grateful to Our Lord for!!!

Soon after my last post, Noelle saw her doctor again and he recommended we start her on magnesium twice a day.  

We soon also started moisturizing again, as we hadn't moisturized in months!  Before, creams would irritate Noelle's skin and exacerbate the condition.  

Well, NOW  her skin absorbs moisture and we have seen it respond pretty quickly to it!

I don't know if it was just time, the creams we use, the magnesium or if it was a combination all the above, but her skin quickly started to change.

For several weeks now I have not been able to qualify any part of her as "flaring."  She has some trouble spots, but they are isolated!

PRAISE THE LORD!

Her arms had a severe setback last month after her skin looked perfect for about a week.  Twice in a few days, she managed to get her gloves off and just rip apart her arms and hands.

She's never done anything like it and it was an extremely frustrating week for me.  For at least a week I had to keep zinc cream on her arms and wet wraps on top (which she hates) to allow them to heal.





 
Thankfully they did heal eventually and look better now, with just some scratches left that are more recent.

I am using two different creams right now.  

One is from the lotion bar recipe that I shared a while back and this one has lemongrass in it.

The other is a cream I whipped together (literally) with:

We also continue to use Young Living's Tender Tush.

I apply the lotion bar when her skin is just dry and we use the zinc cream when her skin is more inflamed, red, or oozy.  The zinc helps to dry it up but not as much as the diaper cream we were using before as this one has other moisturizers in it!

They both seem to be working great!

So here's how she looks right now:

Hair:




Although it doesn't hurt or itch, thinning hair is a symptom of TSW.  The top of her hair has thinned significantly and it is still falling out.

I'm hoping this stops before her hairline is moved back.  I've had to change how I style it!  

Her head has become super sensitive though, I've started braiding her hair and keeping it in braids so I don't have to brush knots out - that equals a screaming match!

Feet:



Feetsies after zinc cream
Noelle's feet are looking pretty good!  Some redness and a few bumps, especially between the toes her flip flops go in (yes, she's wearing sandals!!).  But they look pretty good overall.

Legs:

 her leg after zinc cream
 Her legs have improved greatly, though prove to be something that we constantly have to address.   We've found that the thick "alligator skin" has significantly reduced and softened with moisturizing.  She has several red dots, but no real oozing or bleeding.  They do itch, but not at all like they used to!!!
Top of her thigh after zinc cream
The top of her thighs had some really rough, thickened skin from itching, but moisturizing has softened that as well and they're looking great aside from the little spots you can see in the picture!

Arms:



Noelle's arms have greatly improved, but she still has scrapes from her most recent scratching.  Not deep wounds like last time though!!

Tummy and Back:


It's beautiful!!!

Praise The Lord, her back and tummy are CLEAR!!!!  And they have been for quite a while now!

She'll get an occasional patch that we apply cream to, but that's it!  

What a huge milestone this is to us!!!
completely clear!!
If you look in previous TSW posts, you'll notice that for the longest time, Noelle's back was NEVER soft.  It always felt like alligator skin!

Face and Neck:

Haha, sweetie pie


Her face can be fickle.  It changes quickly from red and a little rough, to smooth and soft in hours!  We see this as a really good sign that we won't have to worry about her face very soon!

Her neck is CLEAR as well!  

She will rub right under her chin occasionally and that will get irritated, but it never lasts long :)


If you have been following Noelle's 11 months of TSW, it will be clear to you that this is by far the best condition that she has been in since October 2013!!!

Her sleep could use some help, but that has improved as well.  We usually go in to stroke and comfort her to sleep 1-3 times each night.  But we rarely have to sleep with her anymore to get her to sleep! 

We even took her to a 3 day conference with us a few weeks ago!

The Lord has been gracious and we are so thankful to be closer to "the end" of TSW for Noelle.  Only God knows when that will be, but we DO know that He'll see us through until then!

Thank you for praying for Noelle and rejoicing with us that she is getting better!

See you at the "one year" mark!! 

 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.
This post also contains affiliate links to the company which I have personally used and recommend.  If you purchase through these links, I will receive a commission, however the cost to you remains the same!


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