We're somewhere around 4 months into Noelle's topical steroid withdrawal.
That's 4 months after ceasing ALL use of topical steroid creams/ointments for her eczema.
You can read about her condition a couple weeks ago in this post.
I'm happy to report that the condition of her skin has IMPROVED!
Other areas of her life have become more difficult however.
Here is just a brief update on how she looks and how she's feeling!
She's HAPPY!
In a BATH!!
This used to be normal for us, but over the past couple months, baths have become torture for Noelle.
This is the first bath she's had in several weeks, and I was SO surprised and overjoyed that the water didn't bother her skin one bit!
I put Organic Apple Cider Vinegar, Epsom Salts, and Lavender Essential Oil in her bath.
The ACV is good for her skin condition, especially if there is any broken skin. It will help protect her from infection.
The Epsom salts and Lavender serve the same purpose.
As you can see, her face has greatly improved. It still gets very dry, but her eyelids are no longer irritating her and they aren't leathery.
Her back also has greatly improved, although it remains the most troublesome part of the body to her.
It will change textures daily, and sometimes even hourly.
It will be soft and smooth like brand new skin, and by that evening it could feel dry and cracked again.
If Noelle is upset about something, it's normally because her back hurts. How it feels no longer correlates with how the skin appears. It can look fine to me, but be bothering Noelle.
In fact, many times at night, she'll complain about it and we'll go in to rub and stroke her back. When lifting her shirt up, it will feel damp. The skin will feel damp as well as though she's been sweating but the skin is cool to the touch. These cool, clammy sweats are apparently a common symptom.
Her feet and ankels also change frequently. Thankfully the skin really isn't bothering her. Occasionally she will itch her ankles, but for the most part, they're fine. They just look like they've been previously burned or something...much better than before, however!.
The skin is very tough and thick. Honestly, I couldn't care less about their appearance and texture as long as it isn't bothering Noelle!
Her legs are what she itches the most when she has a chance. If we leave her unsupervised for a few minutes and she happens to not have her gloves on, her legs are easily accessible.
The texture is very odd on her lower legs. They feel very rough and thick. It doesn't feel like a little girl's skin....closer to elephant hide?
Her thighs are still a little inflamed and red, but don't seem to bother her.
And the back of her knees look pretty red in the picture above. But I can tell you, they are healing very very nicely.
They will occasionally shed and flake...like a whole layer of skin. But they are no longer burning or irritating her!
I don't have a picture of her tummy, but it goes back and forth as well, but hasn't been severe for a few weeks, praise The Lord!
Sleep....or the lack thereof
Noelle is having virtually no issues with nap time.
But nighttime is such a different story. She is now having trouble getting to sleep at bedtime without one of us in there, or screaming and throwing a tantrum before tiring herself out.
This is so hard for us. Bedtime has pretty much always been carefree for our family. We have our routine and the kids have never hated bedtime before (except for random phases that they've gone through).
After finally getting to sleep, either by us laying with her until she falls asleep, screaming until she's tired out, or being distracted by a movie until she's too tired to keep her eyes open, she sleeps for a couple hours.
Then between 12:00 and 3:00 a.m. she wakes and cannot get back to sleep again! I have heard from others going through this same situation that it is normal. I guess it can have something to do with the fact that their adrenal glands are messed up during the withdrawal.
Anyway, to be honest, we finally found the only thing that will relax her. We lay her down on the couch and turn a movie on. Otherwise, it's been taking at least 2 hours to get her to calm down enough to sleep! Even if she's laying next to us!
I'm honestly not worried about it becoming a habit. Our kids have really good sleep habits, and this is clearly because of physical issues, not just being a stubborn 2.5 year old (which, of course...she is).
Stress also exacerbates the issue and can increase the flare.
So if she can get better sleep, and we can get better sleep, in turn reducing EVERYONE'S stress levels, it's worth it to me to let her watch some extra tv!
(Although this didn't work as well last night...
still took her 3 hours)
As far as how we are treating her condition now, we're still not applying creams to her skin unless she requests it, or I feel that it will actually help.
So far, that's not very often.
I continue to apply essential oils to the skin that breaks or bleeds to prevent infection.
She still takes the homeopathic supplements as prescribed by the holistic pediatrician in addition to:
*Cod liver oil in a shot of Young Living NingXia Red
*Enzymes with each meal
*2 Probiotics at night
*Her normal vitamin C and D
We are praising the Lord for her progress. If others were to see her skin, they might be appalled! But we have seen the improvement and are so thankful.
Her behavior is actually much better as well. We see our normal Noelle pretty much every day now! She has her normal issues, but she is playing and interacting with her siblings much more frequently...now if we can only improve the SLEEP!!!
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