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Sunday, April 13, 2014

Topical Steroid Withdrawal - 6 Months In


So here we are at half of a year.
Honestly, I totally thought that Noelle would be done with this by now, but sadly she is not.

Read how she was doing at month 5 here.

This month, there has not been much change, honestly.
Here is how her skin is.

 Her legs are about the same as last month.
We actually did see some significant improvement, and then she got a hold of her shins without her gloves on and went to town scratching.

That day and night her legs were wet with ooze.  It sounds so gross, but for those going through TSW, it's a common term!

The texture of her shins and calves is still extremely thick and rough.  Praying they get better soon.

Her ankles and feet continue to be red, irritated and flaky.  I've noticed the past few days that her ankles are actually swollen as well.

Noelle's thighs are still red, but not too bothersome.  Sometimes they look really dry and I think that the skin will flake off, but it hasn't yet!

Her tummy is not bad, it goes back and forth.  For Noelle, her back, stomach, and arms have been through a long cycle already.  

It seems like those parts of her body cycle much quicker now.  (When I say "cycle" I mean the skin goes from red, to bumpy, to flaky, to clear and then back again)

So while right now, she's got some bumps and redness on her stomach, I doubt it will be there long.  It comes and goes.


Her back is the same as last month as well.  It really isn't bad, however it does seem to bother her a lot.  It's dry, but only gets red when she scratches it...which is frequently :/

Noelle's neck is still pretty itchy lately, but doesn't look bad at all!  It remains dry and a little red.  Sometimes it flakes, but it hasn't actually looked clear so far this month.

Her arms are so fickle.



Right now up by her shoulders is dry and crusty....meaning there are bumps on the skin that aren't red...just...I don't know, crusty!  It's getting hard to find different words to describe her skin!!

Her elbow creases are not severe at all, they just remain dry, but not cracking.

Same with her wrists...now if she starts itching her wrists, they very quickly become inflamed and red, bumpy, and can even develop hives!  They seem to be very sensitive, but also heal back up pretty quick.  ***Case in point, I took these pictures the day after typing that.  Her arms are already red again!

TSW has just recently started to really affect her face.  Last month her mouth was all red and flaky and the creases in her mouth were cracked.
 
Happy little face :)

Just recently I noticed that the cracks had healed up!  The redness is gone, but her entire face is very very dry.  Sometimes it gets red and we'll see some little bumps.

But if she rubs her face at night with her gloves, that skin will flake off and she'll have much smoother skin in the morning!  

So overall, her upper body is doing much better than her lower body.  And it used to be the opposite!
 
We still aren't applying creams or lotions unless she asks for them.

The stress of applying something to help her skin actually does more damage as stress inevitably causes her to flare.

However, we did just get Young Living's Tender Tush and we're trying that in one spot on her leg to see if it helps it heal any quicker.  We shall see!

She's also still taking frequent baths with
However, we will be experimenting this week.  I have noticed that she is super duper itchy the nights that she has a bath.  I don't know if it's one of the ingredients or what, but we'll be trying to pinpoint what it is that irritates her!

A few weeks ago, she went to her holistic pediatrician and he requested that she get an allergy test.

That was NOT pleasant.

It was a blood test, which I was much more willing to do, as I won't let anyone touch her skin with allergens.

But let me tell you.  The kid is strong.  It was so difficult for me and the two ladies helping to keep her still enough to draw the blood.

But the results were pretty interesting.

Her doctor told us that the tests are rarely 100% accurate.  But we want to remove anything that could possibly be making her condition worse than it already is.

Also, her immune system is obviously compromised.  That's pretty common after prolonged topical steroid use.

So her immune system is over compensating and responding like crazy to stuff!

For each allergen, the normal range is between 0 and .35

Here are her results:

  • Wheat -      2.65
  • Corn -       4.38
  • Oat -        7.63
  • Egg Whites - 8.27
  • Soybean -    13.9 
  • Cow's milk - 31.20
  • Peanuts -    54.50
  •  
So, she's showing some allergies to ALL of them, but she is highly allergic to peanuts and cow's milk.

Thankfully, the only foods that are currently in her diet on that list are oats, egg whites, and peanuts.

So we're obviously removing those from her diet as of NOW.

We shall see if there is any improvement with that change...I sure hope there is!!!

It's really interesting because two nights last week were a NIGHTMARE.  Literally the WORST two nights she has ever had.  We could not get her to sleep.  She was awake both nights from about 1:00a.m. - 5/6:00a.m.!

It was so bad.

And now that we have the test results, we realize that she had a couple pb&j sandwiches last week!  And she hadn't had peanut butter for a while before that!

So we're hoping that was the culprit and that things will get a little better.  Since then she's had a good night, and a difficult one...but nothing like those other two!

Here's to hoping we see some changes this next month!
 

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