705 Days Free of Topical Steroids! The TSW Journey continues…

As a last salute to a summer that went by way too fast, we took a cruise with some friends to the Bahamas and visited my mom and family in Charleston for 8 days of sun, food, and fun. I decided to leave my militant TSW rituals at home for the week to see how Brian’s skin and scratch would fare (see Log dated 8/30/15). Maybe it’s just a summer thing–like last year–but his skin got better and his scratching was no worse despite heat, sweat, sun, and water. See pictures dated 8/27/15. It was a nice vacation from our TSW routine and “itch-think”, and Brian spent all his waking hours playing ping pong, eating soft serve ice cream, and having a blast with his friends.

We’ll continue the experiment of no vitamins/supplements while monitoring energy, function, skin, and scratch. Hopefully, we’ll be able to discontinue the daily vitamins and supplements (which is like pulling teeth to get him to take anyway) which will simplify our routine.

TSW is very unpredictable, especially in the later months like 22 and 23+ months out. You think you’re finally done with the cycles and are healed, then BOOM! the full-body symptoms are back again, as if you were in the horrific early months of TSW. For this reason we are thankful for any and all good skin and itch times.

October 2015 will be Brian’s 2-year anniversary of stopping TS. Beyond the itch, he has definitely come a long way. Praying for strength, endurance, perseverance, peace, and healing for all TSW infants, children, adults, and caregivers. Never lose hope!

Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not be faint.”  Isaiah 40:31

Sunset in the Bahamas 8/26/15

Sunset in the Bahamas from the highest deck on the ship (taken by Brian) 8/26/15

8/26/15

8/26/15   Paddle boarding in Freeport 

Paddle boarding without a paddle in Freeport, Bahamas 8/26/15

Paddle boarding without a paddle 

Ping Pong on the beach

Ping Pong on the beach

IMG_1803

God’s gift of good friends

2 thoughts on “705 Days Free of Topical Steroids! The TSW Journey continues…

  1. Hi Rosemarie,
    What a wonderful godly mom you are! All praise to Him!!!
    I too have eczema for the past year. I’m going to give nb-uvb a shot.
    Needing some itch relief and read a paper online that it’s suppose to suppress
    itch and inflammation by modulating the immune system in our skin.
    I’m just wondering how it went with your son?
    How long did he try it for?
    I did note that you said it helped him a bit?
    Thanks!
    All for Him,
    Sophie

    • Hi Sophie,
      Brian didn’t want to do the UVB and wanted to wait to see if his skin would get better. And it did. Starting around end of July, I think, it started turning around. The past 10 days have been very good skin quality and come and go itch. It doesn’t keep him down.
      I have a friend whose daughter used UVB for psoriasis, and she did well, but she wasn’t going thru TSW. Others who have used it in later TSW when skin is a little stronger have reported good results.

      I hope it works for you. 🙂

      Thanks for reading my blog,
      Rosemarie

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