Hello Richmond; Good Bye Topical Steroid Withdrawal!

After sleeping on the floor for the past several months, one of the perils of being able to sleep in one’s own (twin) bed again is falling out of bed–which is exactly what Brian just did as I sat down to write this post. Did you hear the thud?

After a moment’s hesitation as to whether I should keep typing or check on him, I did go upstairs to see if he was okay; and he was. However, I could have just kept on typing because he didn’t miss a wink and could easily have remained asleep there on the floor. I put him back in bed, and he continued snoozing peacefully.  I just hope he doesn’t have a concussion or broken bones in the morning….

Well, we are now back home after a great vacation to Denver and to South Dakota for a family reunion (my in-laws are the BEST,) and I finally updated the daily Log to include the nearly 2 weeks we were gone. If you like to read daily updates, feel free to check out the Log.  It’s kind of like watching grass grow, but sometimes the difference is in the details.  If you just want to see the big picture, the posts are for you.

How do we know that the Topical Steroid Withdrawal is on its way out?

1) MORE SLEEP: Brian can now get 6-9 hours of sound sleep in his own bed without needing ice or a parent to help relieve the itch.

2) BODY CLOCK is getting back to normal: He can go to sleep around 10 or 11pm and be awoken at 8am without an itchfest meltdown later in the day. The time difference while on vacation kind of messed us up a little, but no worries. He’ll get back into the groove.

3) ITCHING HAS DECREASED in frequency and intensity: Itching now ranges from 0/5 t0 2/5, with 3/5 being a “flare” or “increased itching,” compared to the 3/5 to 5+/5 a few weeks ago (See Scratch Scale found in the beginning of the Log.)

4) INCREASED STAMINA AND ENERGY: Brian is able to be active and on the go–often 12-14 hours– from the time he wakes up until the time he goes to bed.

5) POOL: He can swim and play in the pool again. Today, we had a pool party with his Rec baseball team, and he swam and played from 4-8pm, stopping only during adult swim or to eat. This was right after a 1-3:30pm baseball practice with his travel team.

6) SWEAT DOESN’T STING ANYMORE! WE CAN LEAVE THE ICE PACKS HOME!!! Brian did not have any itchfests while on vacation in 90+ degree weather and did not need ice cubes or ice packs to relieve the itching he did have. These past 2 days, he practiced baseball and played in very hot, humid weather while the ice packs stayed at home in the freezer. He did not need them. 

This is HUGE! The feeling is like not having to carry around a diaper bag and stroller anymore. 🙂

So, is his (our) ordeal finally over? Not 100% yet, but we are still happily saying, “Goodbye, TSW! Don’t let the door hit you on your way out!”

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Here are some pictures from vacation and the reunion in South Dakota.

Click on the picture to enlarge. 

IMG_1005A view from the side porch of Moreau River Sanctuary, where we had the reunion. It was absolutely breathtaking, and this picture does not do it justice.

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Brian and his cousins playing corn hole in the back yard at Moreau River Sanctuary.

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IMG_1015Baseball, Petersen/Peterson style–Brian’s getting ready to bat

IMG_1025Late night game of “Left, Right, Center” with the cousins.

IMG_1028Fourth of July parade in Hot Springs, SD. Can you see Brian under the flag, reaching for more candy to toss to the spectators?

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Driving to Breckinridge, CO

  “Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you.”  1 Thessalonians 5:16-18  (KJV) 

9 months free of topical steroids!

A belated Happy 4th of July! We’ve been on the go since the last post and have not yet slowed down enough for me to update the blog.

Friday, July 4, 2014 was Brian’s 272nd day off topical steroids! It was a great “Independence from Topical Steroids” Day.

Itching (1/5 to 3/5 on Log scratch scale), mild shedding, dry skin, and some eczematous patches are still hanging around but have not interfered with almost non-stop activity in often hot conditions. He’s not been using moisturizers much, if at all, since at least 6/28, so it will be interesting to see if his skin gets the same positive results as other Topical Steroid Withdrawal (TSW) folks who have done moisturizer withdrawal (MW). So far, I have not seen a significant decrease in scratching or shedding and his natural skin oils have yet to emerge, but it’s still early in the MW process.

I’ve been having trouble with my pictures but will hopefully have some photo updates soon.

Besides the obligatory scratching and shedding, my bigger little boy is living and loving life. Keep the faith, and hang in there! You will be, too!

“Oh, taste and see that the LORD is good; Blessed is the man who trusts in Him!”
PSALM 34 : 8 (NKJV)