Saturday, September 14, 2013

TSW: One month down!

This past Monday officially marked Lucy being 1 month steroid-free and I was going to write a post, but strep happened, and then catching-up-after-2-days-off-at-work happened.  So here we are, 1 month and 5 days off steroids.
The week before Lucy went through her worst flare (and I know more is coming).  We've cut down on her baths (hello water bill!) and instead have gone back to doing wet-wraps.  Obviously we don't put the steroid cream on her when we wrap her up but we do put on Bee Magic.  Lucy likes being wrapped up, despite her protests when I take out the towel and water-proof pad.  Even though we're doing the wet wraps twice a day and lathering her up with heavy duty moisturizers and vaseline, her skin is still dry and leather-like.  I'm pretty sure this is just all part of the process; many people on the ITSAN forum complain about having "elephant" skin in different places and I see that on Lucy too.  The skin around her butt is thick, droopy, and just plain weird.  Sorry to be graphic but it's kinda hard to describe otherwise.
For the most part Lucy is still sleeping well.  She now wakes during the night more frequently than she used to but she goes back to sleep pretty quickly.  And she might not even be waking all the way up- just enough to let out a few whines and then she's back down.
I think I wrote in my last post how Lucy had tested positive for MRSA.  I just went back and checked- I did not write that.  Long story short- back in Aug. they swabbed her scalp and 2 weeks later called me and told me it was positive for MRSA, which is just infection that is resistant to normal treatment (from what I understand). We did the round of antibiotics for it and on the last day, I noticed her fingernail looked infected.  At first I thought it was fungal but when I took her in, the pediatrician said it wasn't.  She was really surprised she got an infection while on antibiotics.  So we got a new prescription and today will be her last day of that.  I'm sure she will lose the fingernail- she's already lost half of it because it was hanging off her finger so I clipped it down.  I was worried the infection wasn't getting better for a few days because her finger looked so bad but now it's looking better.  It's hard to tell if I should keep it covered, or let it air out (anyone know?)
While this has been a difficult first month, there have been some great blessings along the way.  I mean the fact that when our dermatologist scheduled an appointment for us at Lurie Children's Hospital and it just happens to be the Monday after I'll be up in the suburbs anyway is pretty great.  Also, my best friend generously sent us 3 tubs of Bee Magic so now we don't have to be as stingy with the application.  And another friend who sells Norwex, gave us a Norwex body towel which really helps remove dead skin.  Another blessing was when I was looking for an air purifier for Lucy's room, a friend said she had one in her garage that I could have for $5 and it's just the size we needed.  Lastly, our daycare provider has been a huge blessing for us this year- she has been so patient with us and Lucy so far.  She has been very supportive of our decision to end the steroids and she never acts like Lucy is a burden, even though I know she can be difficult sometimes.
And I know we have so many people praying for her too; I appreciate that so much.  I might write an update after we see the pediatric derm. but otherwise I'll wait until we're done with 2 months.
TSW is exhausting for everyone


  1. Hi,

    just wanted to know how is Lucy doing now. My 6 year old daughter is going through TSW too.

    Thank you,

  2. Hi Joanna,
    Hope you and your family are doing well. I am doing a project on TSW in children, and I was wondering how Lucy is doing now--almost 2 years into TSW?

    Has the original eczema returned? How long, would you say, did it take her to "be over with" TSW? My 11 year old son is in his 18th month, and recovering slowly but surely.

    Thank you!

    1. Hi Rosemarie-
      We had to abandon TSW about a week after I wrote this blog post. Lucy broke out in a massive infection on her face- blood, was awful. We decided to go back on steroids after seeing a pediatric dermatologist. We continued the cycle of flaring, calming/clearing with steroids, remove steroids, and flaring again for another year and a half. About 6 months ago, someone mentioned Dr. Aron on a Facebook group and I joined his patient group to gather information. We signed up with Dr. Aron almost a month ago and are doing quite well. Lucy has the healthiest skin she's had in her life. I understand TSW has helped heal many children but I could not watch Lucy go through one more moment of that hell with no guarantee of when it would end or that it would even work for us. I'm thrilled we have found a treatment that is working for the long term. I highly recommend anyone suffering with eczema to check out the information at There is also a growing group of patients and others considering the treatment on Facebook. Thank you for asking about us and I hope your son continues his healing journey!

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  4. Hi Joanna,

    I'm glad you found something that works for Lucy. Wishing her continued healing!

  5. Hi Joanna,

    How are you and your girls doing? How is Lucy? Is she still on the Aron Regime? I am doing a follow up on my TSW project from last year and trying to touch base with parents of children who went through TSW and see how they are doing today.

    Wishing you all good health,