Friday, August 16, 2013

TSW- Week One

First, TSW= Topical Steroid Withdrawal.  It's much easier to type TSW ;)

So we've been a steroid-free for one week.  I'm beginning to understand how horrible this process is and will be.
Overall, Lucy's skin has been pretty bad- red from head to toe with some small clear spots on her legs.  The rash she had in her diaper area has definitely gone down.  Her scalp also looks a little better.  Still pretty flaky but what's under the flakes is clear skin.  We try and comb her hair at least twice a day; Walker is better at getting the flakes out than I am.
I'd say the worst symptom right now is the itchiness.  Lucy is almost always scratching, no matter what she's doing.  It is no good telling her to stop, or pulling her hands away from her body.  She is relentless and she gets really mad.  I found some cute toddler gardening gloves that have Disney princesses on them; I thought maybe she wouldn't mind wearing them.  I thought wrong.  Trying to get her to wear them was kinda like when my parents thought it was a good idea to put "boots" on the dog.  Except Missy didn't protest nearly as loudly as Lucy did.
What we've been putting on her skin:
We do use the Protopic sparingly every other day.  Walker and I had to kind of reach a compromise on this as I didn't want to put it on her at all.  I had read on the ITSAN forum that some people flared (as in skin turning red, itchy, oozing, etc) after they stopped using Protopic, compared to before using it.  They said it just stretched out the withdrawal.  But we agreed that we could try it and if we thought she flared really bad after using it, we wouldn't use it again.  I guess since we actually have a supportive dermatologist now we can at least try things he suggests, that way we don't lose that relationship.  It does seem to be helping the appearance of her skin, but will it be like the corticosteroids where she flares immediately after we stop using it for a few days?  We'll find out in another few weeks.
We've also been using a lot of vaseline.  Often TSWers cannot tolerate anything else on their skin.  As you can imagine, this has no effect on the itching and doesn't really moisturize the skin that much.  It basically just forms a protective barrier.  We have put her other moisturizers on at times (like the Curel) but she doesn't seem to like those.  For her diaper rash (not even sure we can call it that since she only wears diapers for sleeping) I used Dr. Smith's Diaper Ointment. I picked it out because I could actually pronounce all the ingredients in it and I knew what all of them were.  I think it worked well.  For her scalp, I found this spray by Shea Moisture called African Black Soap Dandruff and Dry Scalp Elixir.  I found it at Wal-greens.  It actually lists eczema as something it treats on the front of the bottle and like I said her scalp is looking better so I guess it is doing something positive.  And lastly, I ordered some ointment that many TSWers have recommended: Medicine Mama's Sweet Bee Magic.  It is pricey.  I managed to get a deal on it (basically 2 tubs for the price of one) but even still, it's not something we can slather on as much as vaseline.  It is very nice though.  Lucy tolerates it pretty well.  I can't tell if it's helping all that much or if her skin looks a little better because of the protopic.  I like the quality but I might try making it myself- I found a homemade recipe online.  Now I just have to find the ingredients...
 Lucy has been taking lots of baths.  This is quite a change as Lucy used to HATE baths.  Like screaming the entire time, asking to get out of the tub.  Now, she asks for them.  We've been letting her take 2 long baths every day.  Sometimes we'll put in baking soda, colloidal oatmeal, or epsom salts.  We even did an apple cider vinegar bath one day (heard it was good for fighting off bacteria).  She really doesn't care what's in the bath, as long as she's in the tub.  I don't know if the baths are soothing to her or if she only likes them because she has access to all of her skin for scratching.
We do Zyrtec twice a day because supposedly it can help with the itching.  I don't know that it does but we'll keep using it for now.  
Praise God, Lucy still has been sleeping pretty well.   Her naps this week have been around 3 hours (although one day she napped for almost five!!) and at night she's still sleeping anywhere from 10-12 hours.  We've had a few nights where she's gone down and didn't make a peep until morning.  The other nights, she might have trouble getting to sleep but then be fine the rest of the night, or she'll wake up between 10-12 really fussy but somehow we always manage to get her back down.  So far, Walker and I haven't lost much sleep.  I'm praying so hard that continues!  It's hard enough watching her scratch all day and deal with all of her fussiness, but I know it'd be 10 times harder if we weren't getting sleep.

What follows are 2 pictures of Lucy- if looking at crusty or red skin turns your stomach, then don't scroll down.

I think this was taken on August 11th- 3rd day without steroids.  You can see how red she was getting already

This was taken on August 14th, 6th day with no steroids.  Her face is definitely the worst part right now.

I guess the good thing is that her face looked better just a day later.  We've been trying to very gently get the crusties off her face but she really can't tolerate us touching her face right now.
I think the hardest part of this is seeing how this is affecting her spirit already.  She doesn't want to go places anymore.  Most days all she wants to do is sit on the couch and watch TV or play on my iPad.  Or of course, take a bath.  I try to engage her in playing with her toys but she just tells me "no."  I feel like the last 2 days we've seen her mood improve a little bit.  Many teens and adults going through TSW develop depression; I really hope this doesn't have any long-term negative effects on Lucy's emotions.

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