So it's been another month going through Topical Steroid Withdrawal with our now almost 3 year old.
My last post detailed how she was doing about 4 months after we discontinued all use of topical steroid creams/ointments. If you didn't read it, you can do so here.
The few weeks that I covered in that post really weren't that bad!
Well, this last month has been less than perfect...in fact, it's been pretty darn rough.
My girls (and my husband and I) love the new movie Frozen and the soundtrack. And let me tell ya...the phrase "Let the Storm Rage On" is stuck in my head for more than one reason!!
This feels like a storm...an ongoing one with no end in sight!
Anyway, here's how her skin is doing.
Her legs have been the worst of all this month.
The back of her legs are consistently red, especially her thighs. Thankfully they aren't TOO itchy, but they definitely bother her at times.
The skin calves and shins got extremely thick. She hasn't had any skin be so thick and tough before. It's really hard to describe if you haven't felt it before!
It is extremely itchy almost 24/7. When she itches her shins, the skin breaks easily and starts to ooze. :(
When it oozes, it easily turns colors because any fabric that touches it sticks. So the above picture looks pretty gross, but in the bath, it all flaked off easily while I gently rubbed them.
Right now, they look better, but are still rough.
Her back is what always bothers her the most.
It's interesting because it really hasn't looked bad at all, but it is almost always itchy. It flakes quite alot!
The skin around her mouth has been consistently red and flaky.
The creases in her mouth are also cracking, poor thing :(
Her tummy is pretty red.
It looks inflamed the second she starts itching it, but thankfully there isn't any flaking or breaking of skin on her stomach.
Her neck, however is a new place that we're seeing irritation.
It gets red and very itchy. Then it gets dry and cracked looking and flakes. Then starts over again.
Her wrists are very sensitive and it takes seconds for them to turn into a red, inflamed, itchy bloody mess.
In fact, another term for Topical Steroid Withdrawal is "Red Sleeve Syndrome."
A couple weeks ago, she got a hold of her wrist. She itched like crazy while throwing a big tantrum in her room. It took a day or two to turn into a complete red sleeve. Her entire arm from elbow to wrist was totally red and puffy. A couple days later, it got better.
So that's how quick things change for her!
She is doing well with baths right now, thank goodness because they really are helping her with the itchiness and the texture of her skin.
This is what we put into her bath:
*1/2 cup Baking Soda to alkalize the water
*1/2 cup-1 cup Organic Raw Apple Cider Vinegar
*1 cup Epsom Salts with 6-8 drops of Lavender, Copaiba, or Melaleuca essential oils.
*I just ordered Dead Sea Salts as I've heard they are super good for her skin when in the bath!
As far as supplements go, here is what she is taking:
*1/2 tsp Cod Liver Oil in the morning (her dr. wants us to increase to 1 tsp)
*1/2 oz Mineral supplement in the morning (a friend gave this to us to try, we'll see if it it helps!)
*Chewable Young Living KidScents Enzyme with each meal
*Young Living Life 5 probiotic and S. Boulardii yeast probiotic in a couple spoonfuls of applesauce or yogurt every night before bed.
*All the supplements that her holistic dr. prescribed her 4x/day.
Chris and I are taking Young Living NingXia Red every day and will be starting the girls on it soon as well.
Her sleep these last couple weeks has been very challenged.
Each night as we get ready for bed, we put RutaVaLa essential oil on her feet.
We have noticed a HUGE change in her actually getting to sleep while using RutaVaLa. In fact, I would say that we had trouble getting her to sleep maybe 3 days out of the month we've been using it!
So I'm so thankful we found that, but she is waking in the middle of the night 1-4 times.
It is extremely frustrating!
She has a rough time getting BACK to sleep due to her itching and she just. can't. fall. asleep.
We are ordering Melatonin to give to her when she wakes up to see if that helps her.
But right now, she requires lots and lots of back stroking, leg stroking, head stroking, and us just being present.
The last week has been the worst and has really tried our patience.
My husband has reminded me that this is a trial for us. And we can either be sanctified by it, or throw the opportunity away.
And those nights that I get so mad that she won't sleep, he has also reminded me that we either love our sleep too much, or don't love HER enough.
I thank God He gave my husband to me. I need those words.
I keep getting lost in frustration when I feel like she SHOULD. BE. SLEEPING instead of screaming.
That's when I forget that she doesn't WANT to wake up. She doesn't WANT to itch. She wants to feel normal and she just doesn't.
So we are doing our best to help her through this!!
We saw her holistic pediatrician this week. (for local family and friends, this is who she sees)
He wants her to get a blood test done to test for environmental and food allergies.
He also said that we can start administering Benadryl at night to see if it helps her itching. We've done it for two nights so far and it hasn't helped. We'll continue for a week or so more and see if there is any improvement.
Noelle's temperament usually directly relates to the condition of her skin. Meaning...this month has been hard :)
We have had many tantrums and ugly attitudes. We are doing our best to handle them rightly and point her toward kindness! But we definitely look forward to some changes!!!
She does, however have fun. A few months ago, we didn't see her normal self very often. We see her crazy smile much more these days!
Life moves on, and she's coming along with it. Just sometimes it's by stomping her feet and yelling in the middle of a store.
Other times, it's by playing with her brother or sister, being tickled by daddy, or putting puzzles together (her favorite).
Oh, Angie, I certainly feel for the poor thing. My two inch square patch itches like crazy and it feels so good to scratch - I can't even begin to imagine how bad it could be all over the body. I stopped the steroids at about the same time and to tell the truth, it does not seem any different than when I was using them. The cycle is the same. It goes away, it comes back on and on.
ReplyDeleteSee, I can't relate to her that way! I've never had an issue like this with my skin! BUT, I keep forgetting to bring you the oil I told you about! But I have it ready for you :) It's Melaleuca and I'll bring a little of the cream that we made too!
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