TSW Champions Beyond the Itch

Brian and his team, the Virginia Breeze Elite, competed in their final 11U tournament of the 2015 season: the Triple Crown Summer Nationals in Myrtle Beach, SC. During the week, the temperatures were in the mid to upper 90’s and the humidity so high it was stifling. One day the heat index was 108 degrees, yet the boys played on, and Brian’s skin and itch were not an issue. They went undefeated, battling back through games that should have knocked them out of the tournament. Brian played in one game that lasted 9 innings, after a score of 0-0 in 6 innings of phenomenal play by both teams!

Whether you are in the horrific early stages of Topical Steroid Withdrawal (TSW) or in the later stages, wondering if it’s still TSW or now “just eczema,” don’t lose hope; don’t give up! Focus on the life beyond the skin and itch, and–itch or no itch–live each moment to the fullest. Faith. Patience. Perseverance. Victory will be yours!

In winning the Triple Crown Summer Nationals in Myrtle Beach, the Virginia Breeze Elite finished the season 42-1, taking home 7 of 7 11U championships in 4 states, besting teams from Ohio, Delaware, Maryland, NC, VA, Georgia, and Venezuela. Next goal: Cooperstown 2016!

In winning the Triple Crown Summer Nationals in Myrtle Beach, the Virginia Breeze Elite finished the season 42-1, taking home 7 of 7 11U championships in 4 states, besting teams from Ohio, Delaware, Maryland, NC, VA, Georgia, and Venezuela. Next goal: Cooperstown 2016! (Brian is in the front row, last on the left.)

“Thanks be to God! He gives us the victory through our LORD Jesus Christ.”                     1 Corinthians 15:57

How to see progress at 21 months TSW when healing seems stalled

If you are just starting TSW or thinking about starting TSW, please read this and this  carefully. Also, you may want to refer back to the March 2014 Log entries and posts for pictures and information that may more closely reflect your current position in this TSW journey.

For those nearing the 18 month or 2 year mark, you may understand what I’m sharing. Brian started this journey as a 10 year old, and he is now 12. We are going on Brian’s 21st month free of topical steroids (TS), and he is 125% physically and functionally back to normal, no longer needs benadryl/zyrtec, can pretty much sleep through the night, and has not had an infection requiring antibiotics in nearly 2 years. However, the recovery from TSW, in terms of “come and go” full-body skin signs and symptoms if itch, rash, and shedding continues. This makes me feel like last year was better.

I remember June-August 2014 (months 8-10 TSW) being a huge breakthrough: clear-skin, itch-free, shed-free, and sound sleep for Brian–especially the month of July. A three-month span of incredible normalcy which we had never experienced since he was 17-months-old. And now, July 2015, though the shedding finally slowed again, he continues to scratch periodically during the day and some at night, occasionally waking–not too long– because of the itch, and his skin is marked with scattered scratches and sporadic erythema or rashy areas. Then the next morning, it doesn’t look as bad as it looked the night before, and I think, “His skin and itch were so much better last year!”

SO, I go back to read my blog and log entries for this time last year and compare them to now, and this is what I found regarding skin and itch:

MONTH/YEAR             SCRATCH SCALE (grossly throughout the day)
July 2014                     Generally 2/5 to 3/5 then <2/5 towards end of July 2014

July 2015                      Generally 1/5 to 2/5 and more days with episodes of 0/5 to 1/5
                                      lasting 1-4 hours at a time. Occasionally a 3/5 episode at night.

Lesson for me: my memory sucks and I shouldn’t rely on it! Thank goodness I made a scratch scale, took pictures, and wrote down descriptions of Brian’s signs and symptoms, documenting his treatments and progress. Otherwise, today I would have nothing but distorted memories with which to compare his current condition, and I’d feel like minimal progress has been made. Overall, the itch and scratching episodes have decreased in intensity, frequency, and duration. This year is better than last year.

Lesson for you: Document. Take and date pictures. Use objective measures so when you feel like nothing’s happening, you can look back at your data and see just how far you’ve come.

Get a supportive doctor. Stave off infection. Treat the symptoms. Scratch sensibly. Be patient. Give thanks. Keep the faith. Beyond the itch, healing does happen!

“I can do all things through Christ who strengthens me.” Philippians 4:13

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July 13, 2015   DAY 647  Pictures after return from SD. Used QD light moisturizing with coconut oil on torso/face and Stephanie The Home Apothecary’s Breezy Balm on extremities.

IMG_1660 IMG_1662 IMG_1663 IMG_1664 IMG_1665 IMG_1666 IMG_1668 IMG_1669 IMG_1670 IMG_1671 IMG_1672 IMG_1673 IMG_1674 IMG_1675 IMG_1678 IMG_1679 IMG_1680 IMG_1681

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The pictures above are after recovering from a several-months-long flare involving return of lower extremity red sleeves, night scratch-waking, and teaspoons of shedding.

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Less than 1/16 teaspoon shedding. Compared to 1/2 and 1 tsp measuring spoons.

Meeting other TSW “skin friends”

On our way home from South Dakota, we were able to stop in Colorado to get together with three other boys who, like Brian, are also recovering from topical steroid withdrawal (TSW). We’ve followed their stories on Facebook and their blogs for months, so it was really special to finally meet them and their dedicated, caring parents in person.

We went to Dave & Buster’s and they all had a blast. All those hands stayed busy playing games rather than scratching! for almost 5 hours! Whatever works. 🙂

Torrin, Keegan, J, L, Brian  (10, 28, 0 , 23, and 21 months TSW, respectively)

(left to right) Torrin, Keegan, J, L, and Brian (10, 28, 0 , 23, and 21 months TSW, respectively)

“Jesus loves the little children….”