From 5th grade to 9th grade! Where has the time–and TSW–gone?

I hadn’t intended to stay away so long, but a lot has happened since my last post in January. Between baseball tournaments, school, traveling, and taking care of dad, I completed my transitional doctorate in physical therapy from Northeastern University in July and received my direct access certification for VA; my TSW systematic review paper and my capstone paper on scleroderma have been accepted for publication and will be available online soon; two other papers on scleroderma are being considered for publication; we met up with other TSW warriors in Denver; and the world-famous Briana Banos visited and interviewed us for her documentary on TSW, “Preventable: protecting our largest organ.” And, ironically, ALL this never would have happened had it not been for TSW.

Brian started TSW (topical steroid withdrawal) as a 5th grader in the  Fall of 2013. Today, he just completed his first month as a 9th grader! So far, he’s juggling a rigorous curriculum and baseball pretty well. Now, the lack of sleep is due to homework and projects, not the incessant itch of TSW. Although his skin is not perfect–no thanks to bad genes–three of the five persistent TSW symptoms I’d been monitoring (elephant skin, red sleeves, feet and ankle flares) did not rear their ugly heads this past spring and summer. Dare I say it and risk jinxing us? Could the TSW be over?

September 5, 2017       First day as a high schooler!

Nahhh…we still have to get through winter and spring. If there’s more snow on the ground than on his sheets and if his flares don’t reoccur, then I’d say we’re done. In the meantime, I’ll continue to gratefully and joyfully watch my sweet little boy grow into a strong young man, made wiser and more resilient by this unenviable journey.

 “You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent. O LORD my God, I will give you thanks forever.” Psalm 30:11-12

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.

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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.

TSW Symptoms and Treatment: 18.5 month update

***Please note: more frequent or daily updates and documentation can be found in LOG.

On October 6, 2013, almost nine years after off/on, as-needed use of topical steroids (TS) for eczema, we stopped using TS on Brian because the medications were no longer working to control  his eczema: his skin condition was deteriorating, and the quality of sleep, function, and life were adversely affected.  Thus began our wild ride into topical steroid withdrawal (TSW) (aka Red Skin Syndrome).

A year and a half later, we’re still on the TSW roller coaster, but the twists, turns, drops, and jerks aren’t as nauseating and unbearable as they used to be. In other words, it’s more like being in a ride line at Hogwarts castle in Universal Studios. You know you’re moving forward, but there are many stops and starts, double backs and zigzags, high places out in the sunshine and fresh air where you can see the end, then back down and around the bend into long, dark corridors where you can’t see in front of you, and there’s barely a glimmer of light. Nonetheless, you keep moving forward anxiously (and sometimes not so patiently) because you know that there is an end. We are all too ready for that end.

It cannot go without saying that the underlying eczema may now be reemerging as the TSW symptoms are working their way out of his system. So how do we know TSW is not already done and that it’s not just the underlying eczema returning? Because the symptoms are still not “typical eczema”. They are full-body manifestations (of signs and symptoms not seen in his eczema), not just localized patches of dry, itchy, nonblanchable redness.

Summer 2014, Brian’s TSW months 8-10, was great:  normal skin, 7-9 straight hours of sleep at night, zero obvious shedding, and soft, itch-free skin that required little to no moisturizer. But all good things must come to an end, and he’s been in flare since October 2014. It began as just slightly more noticeable scratching and gradually progressed to involve the return of: sleep disruption due to increased night-time scratching and waking; occasional night sweats/ooze; visible and measurable full-body shedding; abraded and excoriated areas on skin due to increased night and daytime scratching; dryness and rapid skin cycling; and a redness that can vary from just multiple red areas here and there to a more generalized pinkness, “red skin,” most noticeable at night.

Despite the return of the Scratchy Monster(c), life is a piece of chocolate cake (though very dry and crumbly, with no milk to wash it down) when compared to this time last year as well as 18 months ago.

Here is an update of Brian’s current signs/symptoms and treatments. We continue to diligently monitor his skin for infection.

*GENETIC MUTATIONS in BHMT, CBS, COMT, MAO, MTHFR, and GIF
which are being addressed by naturopathic doctor (ND) with vitamin and supplement support:  1/2 tab Vitamin B complex plant-based, magnesium, zinc,  glutathione, N-acetyl cysteine (NAC), histane,  vit D3, and lycopodium   (continuing)

*TRADITIONAL CHINESE MEDICINE (TCM): 1 month trial with 1st 2 weeks seeming to improve night sleeping and increase energy but increased daytime scratching. We changed one ingredient in the formula for the second 2 weeks but saw no significant decrease in daytime scratching. We had some compliance and logistic issues, too, that may have affected the effectiveness of the TCM, so we discontinued it. I feel TCM would be beneficial if consistently followed and may try it again in the future. Just too many variables in the pot right now. (discontinued for now)

1. IMPAIRED SLEEP: He is able able to fall asleep between 10 and 11pm with 1/5- 2/5 ss. He’s not consistently sleeping soundly greater than 3 hours straight due to scratching,  up at least 2x with 3+/5 ss, but he is able to get to school by 8:05 am.

RX: Night time reading, acupressure, deep breathing, parent physical assists with scratching so he can try to sleep,  ice packs

2. ITCHING:  Whole body, with primary areas being upper back between the scapulae and over their musculotendinous attachments to the spine; elbows; dorsum of hands and feet; achilles and ankles; thighs; and scalp along the hairline. 0/5 to 3-/5 during day. No major itchfests, but more constant moving of hands like “comfort scratching” per ND. Stress exacerbates the scratching intensity. Overall, scratching is greatly decreased from the 4/5-5/5 scratching and screaming itchfests from the early months of TSW.

RX: ice packs; coconut oil, lemongrass balm, bag balm; acupressure; deep breathing/delay scratching; parent occasionally physically assists with scratching; Microsilk tub bath; oatmeal bath; homeopathic itch preparation. He often declines benadryl and zyrtec when offered. 

3. BURNING/STINGING: after months of absence, skin burns or stings only occasionally with sweating or when entering shower, possibly due to microcuts in skin from increased scratching–who knows…

RX: deep breathing; massage of affected part; When stinging is a result of heat and sweat: towel off, apply ice pack, change to dry shirt, deep breathing, positive imagery

4. FOCUS/CONCENTRATION: Greatly improved. Full-time 6th grader; missed no days and got straight A’s in an honors curriculum for the first 3 nine weeks while participating in sports and other extracurriculars.

RX: deep breathing, acupressure, UNDA/coconut oil/lemongrass balm for when the scratching is 3/5 and becoming disruptive

5. MENTAL/EMOTIONAL—Much improved. Confidence better. Occasionally will get emotional late at night after a long day, but it’s difficult to distinguish between TSW-related or just “6th grader-itis”

RX: lots of hugs; reassurance; positive music, language, laughter; tough love; participate in activities with friends and teammates as much as possible; daily devotions and prayer

6. PHYSICAL FITNESS: 110% improved; currently playing travel and recreational baseball several times/week; able to run sub-8 minute mile

RX: get outside to play baseball, play with friends, run, jump, bike as much as possible; MOVE! STRETCH! BREATHE! BE THANKFUL!

OTHER:

a) SKIN TEXTURE: Variable. Pebble-grained texture of dorsum of hands and feet and fine sandpaper texture of arms and legs. Skin texture of entire back cycles  between soft and smooth as a baby’s butt to pebble grain texture to fine/medium sand paper, with or without redness. Dry skin, peeling/flaking especially elbows, anterior knees, heel cords. “Elephant skin” noted at the elbows and knees and “plasticky” feel

RX: Bag Balm to heel cords and any very dry, cracked spots on feet/hands; coconut oil on face/neck and arms and other body parts; lemongrass balm 

b) SHEDDING— Full-body shedding continues with the amount varying, depending on the cycle his skin is in, but not to the large quantities seen in the first few months of TSW. A good day is less than 1 teaspoon (down from a couple of tablespoons) of dead skin on bed sheet by morning. Unmeasured shedding continues throughout day as evidenced by the flakes left on the car seats, chairs, etc.

RX: Shaking out sheets, bedding, clothes  daily; moisturize or not with coconut oil, lemongrass balm, and/or bag balm

1/2 teaspoon shedding overnight 4/15/15

1/2 teaspoon shedding overnight 4/15/15

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c) EDEMA/OOZING: Several incidences of night sweats that soaked the sheets, had ooze smell but the consistency of sweat

RX: extra sheets to sleep on to absorb ooze and odor; keep skin clean; shower

d) BREAKS IN SKIN due to increased scratching: anterior and posterior shoulders, bilateral arms/forearms and hands/wrists; less on knees and popliteal fossae; and those pesky feet and ankles again!

RX: Microsilk tub bath in PM, shower in AM, file nails nightly to the nubs, wash hands, keep cuts clean; moisturize with coconut oil and/or lemongrass balm; ACV baths at least 2x/week and mupirocin topical antibiotic ointment to prevent infection

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Return of the “red sleeves”

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Left foot:  white sole; red dorsum

These small pictures to the right and left were taken after moisturizing.

The following 4 pictures are the feet before moisturizing. There is a clear demarcation between erythematous dorsum and white plantar surface. The lighting in the pictures makes it less obvious. IMG_1479 IMG_1480 IMG_1481

Feet/ankles at 18.5 months

You may think the feet above don’t look so bad, but compare them to pictures taken at 12 months and 15 months TSW below. (October 2014 and January 2015) One step forward, 5 steps back….

HAPPY FEET!   no itching here despite 1 year anniversary flare on other body parts!  Thank you, Jesus, for small favors!

HAPPY FEET! no itching here despite 1 year anniversary flare on other body parts! Thank you, Jesus, for small favors!     (October 2014–12 months TSW)

January 13, 2015--15 months TSW

January 13, 2015–15 months TSW

e) BLANCHABLE ERYTHEMA:  It’s baaack!  Redness of the skin (dilation of the blood vessels) that turns white (blanching) when you press on it, and turns red again when you take pressure off. Light red or pink this time, primarily on the back side of body–head to heels. Happens mostly toward the evening. According to Dr. Rappaport, TSW is a vascular (blood vessel issue), and eczema doesn’t blanch.

No RX needed. TSW skin is just fascinating….

f) TEMPERATURE DYSREGULATION: This was gone for months, but now  Brian’s complaining of being chilled or cold more lately.

RX: Put on a jacket!

We will get to the end of this crazy ride. Healing is happening; keep the faith; keep moving forward!

Faith is being sure of what we hope for and certain of what we do not see.” Hebrews 11:1

“Shedding and Oozing and Sweating–Oh My!”

For those of you just starting this topical steroid withdrawal (TSW) ordeal, here is some great advice/tips that I came across during those dark days of October/November 2013 when Brian just started TSW.

https://mylittleredwarrior.wordpress.com/2013/09/02/shedding-and-oozing-and-sweating-oh-my/

Also some good news. TSW warrior Nina A. was able to see dermatologist Dr. Lio for an appointment, and she said he was amazing and dedicated to helping all his patients, that includes the 10 TSW patients he is currently seeing. She, like Dr. Lio, is going to participate in the Itch for a Cure Eczema walk in Chicago.  Yay, Nina!

So, if you have no supportive doctors near you or if you are anywhere near Chicago (that means within 200 miles or whatever you’re willing to drive), Dr. Lio at the Chicago Integrative Eczema Center understands TSW and may help support you through it. He has no miracle cures but may provide alternative treatments to help you as your body/skin heals. It will also be a boost for the mind and soul knowing that someone who can make a difference in the medical community believes in TSW. 

We TSWers need to support him and his efforts as he pushes for recognition of TSW (aka Red Skin Syndrome) in the medical community.

Have a GREAT Weekend!

“With God we will gain the victory, and he will trample down our enemies.”  Psalm 60:12

It’s Easy to Report Your Symptoms from Topical Steroids to the FDA

PLEASE, PLEASE, PLEASE report to the FDA any adverse reactions you may have or have had from topical steroids, non-topical steroid medication, or other medications you have tried for eczema.

Per the FDA, “bad side effects” include new or worsening of symptoms. Sound familiar? Tell them about the burning, stinging, increased itching, redness, oozing, shedding, swelling, insomnia, temperature dysregulation, hypersensitivity, fatigue, elephant skin, thinning skin, loss of function, loss of work or school, etc.  They need to hear from more of us! All of us!

FDA Medwatch: http://www.fda.gov/Safety/MedWatch/

Remember to save, make a copy, or take a picture of your report, and follow up with a call to the FDA line –(855) 543-3784 toll-free, or (301) 796-3400– if you do not get email confirmation that they received it.

That’s what I did when I found out that Brian’s “worsening eczema” was not just eczema anymore. We CAN make a difference.

Thank you!

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) 

Day 252 and the First Day of Summer Vacation!

After winning their first game in day one of a two-day baseball tournament, Brian and most of his team participated in a surprise birthday party for one of their teammates. The first day of summer vacation should be celebrated with a party and a dip in the pool!

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“Hmmm, decisions, decisions: belly flop? cannonball? swan dive?”

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“Look, Mom! No stinging!”

Despite having access to indoor and outdoor pools and his past enjoyment of swimming and splashing in the water, it has probably been over 12 months since Brian has been in or has wanted to get in a pool due to his skin.  Today, he did great, and his skin felt good. He had a BLAST, and it did my heart good. Hooray for reaching another milestone, Brian!

Looks like we’ll add another activity on our fun list for this summer.