Here we go again….

Praise be to the LORD, to God our Savior, who daily bears our burdens.” Psalm 68:19 
  

“Scratch my back…..”

Going through some rough itchy days and nights right now. Brian’s back to waking up at 3am, sleep-scratching vigorously until 4am, then sleeping hard until I have to “shake him awake” at 7:15am to get ready for school.

As I help him scratch in the wee morning hours so he can try to sleep, I have to reassure myself with the theory that “itching=healing.” We’re just helping to slough off the old skin to uncover the good skin underneath. Like Juliana says, who doesn’t feel that sick satisfaction of peeling off a nice big flake of dead skin? And repeating this about a thousand times….

Okay, if you’re not going through TSW or not a parent of a child going through TSW, it does sound gross. So, try this: spread Elmer’s glue on the tip of your finger or the tip of your kid’s finger. Let it dry. Then try peeling it off, trying to keep the whole thing intact. Cool, huh? Well maybe not so much for you, but with TSW, one has to find pleasure in the simplest things.

Hopefully, Brian’s sleep disruptions will not impact his daily function like it did last November. I could handle homeschooling a 5th grader, but I don’t know if I could survive the attitude and moodiness that would result from homeschooling a 6th grader/preteen. Brian wouldn’t like this change in me, either. 🙂

“Praise the LORD, O my soul, and forget not all his benefits–who forgives all your sins and heals all your diseases.” Psalm 103:2-3

Topical Steroid Withdrawal and Technology

Technology is a wonderful thing.

Wow! I can’t believe I said that! Remember, I’m the one who thought that anything electronic is an anti-social device and that games like candy crush are a waste of time. I’m the one who resisted technology so much that I’d still be using a typewriter and a dial-up telephone had it not been for my techno-gadget-guru husband, who patiently drug me along–kicking and screaming–into the 21st century. Yes, I have to admit, technology has been very instrumental in Brian’s 12.5 months through topical steroid withdrawal.

It was through the internet that I found Juliana’s blog and ITSAN. They gave a name to Brian’s worsening condition: topical steroid addiction, topical steroid withdrawal (TSW,) red skin syndrome. We stopped using topical steroids on him the very next day, and our nightmare to healing began.

The scientist in me demanded I observe and record details, and I was so appreciative of advice from other TSW blogs, that I started this blog. The iphone allowed me to take pictures to document Brian’s changing symptoms and conditions to go with the words, in an effort to help others on this same journey.

It was through the ipad and that abominable Candy Crush that Brian (with his dad) was able to find a few moments of relief from the itching.

The blu-ray player and many trilogies helped us through weeks of itchy insomnia.

In the 4th month of TSW, playing on the x-box kept Brian from scratching himself bloody. Eight months later, he is able to play x-box live with two other “TSW x-boxers” his age from Texas and England, each helping the other resist the itch and providing moral support for the days ahead.

Skype and email have allowed me to connect with the parents of Brian’s new x-box friends, and we share ideas, stories, heartache, and support.

I’m a little slow sometimes, so please excuse my enthusiasm over these things that you’ve probably already been using for years. I’m just so happy and grateful that these “anti-social” devices and technology can serve a humanitarian purpose in connecting and cheering up people who can, understandably, become depressed and isolated because of TSW. We’re on this rough road together, and technology is helping our boys’ adversity be a little more bearable.

See, an old dog CAN learn new tricks….but I still hate Candy Crush. 🙂

Brian and friends Minecraft adventures:

BRIAN, OLIVER, AND FAIZ won’t let TSW–or time zones–keep them from building with friends!

 

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.”  2 CORINTHIANS 1 : 3 – 4

Today is Brian’s One Year Anniversary off Topical Steroids!

AND we celebrated it by
scratching…all…night…long…. Happy Anniversary!

At least he was able to get up in time for school, and his skin was no worse for wear–considering I was expecting bloodied sheets and giant holes in his skin by the sound and intensity of his “sleep scratching” last night. We’ll have to monitor the sleep disruption, as this is what led up to his eventual decline in function last year.

Veterans of Topical Steroid Withdrawal (TSW) have spoken of the “11-month flare” and the “anniversary flare.” I feel like we’re living evidence of it. Louise, 33 months off topical steroids, speaks of this in this post and has pictures of her anniversary flare here. Thankfully, the flare was short-lived as you can see in these recovery pictures in her blog.

Brian’s flare (which started at the end of July 2014) has consisted mostly of increased obvious scratching, more rough and dry patches or areas of skin, and the appearance of multiple low-profile, slightly raised areas of skin that look like an old-fashioned allergic reaction, especially toward late evening. He has had more night scratching than June/July, especially in the past 2.5 weeks, that has caused him to wake up several times at night. It is very frustrating.

Beyond the itch and skin issues which continue to get better, then worse, then better, then worse, then better, then etc. in this loooong healing process, Brian is doing pretty darn good.

Some positives after 12 months of TSW:
–Over all, he is able to sleep at night, be awakened in the morning (7-7:30am,) and be awake during the day, with a more normal sleep-wake cycle.
–Flaking less
–Able to sweat WITHOUT stinging
–Decreased itching (overall) compared to last year; itch is not incapacitating
–Stronger skin
–Attending 6th grade full time
–Enjoying skyping or video chatting and playing x-box with a 12 year old boy who is 5 months into TSW story here
–Playing travel baseball and running cross country
–Has normal to better-than-normal energy, stamina, and function

The roller coaster ride continues, but so does the healing….

“We live by faith, not by sight.”  2 Corinthians 5:7 

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 Here are only a few flare photos because Brian wouldn’t pose for pictures of his back/chest. This may be the end of the photo documentation of his TSW, as he has become less willing to stay still for pictures and more intent doing whatever it is that happy, healthy 6th grade boys do! I can live with that.

**Thankfully, his feet have healed beautifully and presently do not itch, despite how bad they were several months ago.

CLICK on picture to enlarge .

Shoulders and back have multiple slightly raised, erythematous dry patches. They look better, flatter, less erythematous in the morning, and can look worse, more “flared-looking” in the late evening or when there is physical, emotional, or mental stress. Brian got a healthy dose of sun this summer and the mottled appearance of his skin shows where he has been scratching.

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1 year anniversary 10/6/2014

LEFT (ANTERIOR) SHOULDER

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10/6/2014–1 year anniversary off topical steroids

NECK and CHIN

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10/6/2014–1 year anniversary off topical steroids

BACK of BOTH KNEES

FEET and KNEESIMG_1219

Thin scab on right shin  from where he’s been scratching so hard.IMG_1220

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10/6/2014–1 year anniversary off topical steroids

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10/6/2014–1 year anniversary off topical steroids

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10/6/2014–1 year anniversary off topical steroids

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10/6/2014–1 year anniversary off topical steroids

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10/6/2014–1 year anniversary off topical steroids

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And yet another win!  It’s hard to stop those Breeze boys!

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Champs again! September 30, 2014 (Brian is kneeling, last one on the right.)