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