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

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

Would you wish TSW on those who deny it exists?

Sometimes I do, especially when TSW symptoms return with a vengeance and cause so much itch, pain, and misery to a great kid like my son.

For the past 2 nights, Brian has awoken scratching furiously (4/5 Log scratch scale) and drenched in sweat. It certainly felt like sweat but smelled a little like the ooze of old. His back was red and mottled like a heat rash. Daytime scratching has increased also.

SLEEP: not sleeping through the night anymore, sleep scratching hard (3+/ to 4/5 Log scratch scale) several times between 12:00am and 5:00am; sound asleep by 6am (bus comes at 7:45am)

SKIN: open scratches on shoulders/blades, back, lateral glutes; badly scratched-up elbows and knees; doing ACV baths nightly past 2 nights to prevent infection. lemongrass balm to knees/elbows help calm the scratching…temporarily

Dry and flaky; increased shedding

OTHER: appears to be some increased emotional lability this past week, some increased trouble staying focused, trouble thinking

I’m feeling sad, frustrated, and disappointed at the return of all this. He’s 14 months free of topical steroids, and, especially in the evening, his skin looks like it never healed.

Breathe deeply;

be patient;

be grateful.

Tomorrow is another day…closer to healing.

I will still praise God and thank the good LORD because He continues to heal Brian, even though our eyes beg to differ.

“I have set the LORD always before me. Because he is at my right hand, I will not be shaken. Therefore, my heart is glad and my tongue rejoices; my body also will rest secure.”    Psalm 16:8-9

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) 

Happy 5th Grade Graduation, Brian!

When I grew up, graduations from high school and college were a BIG deal. Now, it seems we celebrate graduating from everything: preschool, kindergarten, 5th grade, 8th grade, etc. Every event has become a big deal, and some are not just little ceremonies but elaborate programs with all the festivities of high school and college. I don’t know about you, but I feel that we, as a society, have gone a little overboard. 

However, today, I will suspend my critical, judgmental, stick-in-the-mud, party-pooper attitude and happily celebrate with all the other parents of rising 6th graders because today, despite not being in class full-time since Thanksgiving 2013 and despite all the itching and pain and fatigue and hardship he has endured due to topical steroids and topical steroid withdrawal (TSW), Brian has “graduated” from the 5th grade–with honors.  🙂 He and several other students were recognized for being school ambassadors and for volunteering to help as a recess buddies. In addition to making straight A’s for the past 3 grading periods, Brian also received the President’s Award for Educational Excellence. We are very proud of him.

Best of all, from a TSW standpoint, he 1) got to school by the first bell at 9:05am, waking up relatively early after getting a sound 8 hours sleep, and 2) was able to march, sit, stand, sing, laugh, and sweat along with his fellow classmates during the hour and a half program without scratching! He looked just like all the other 170+ fifth graders who were waiting patiently to get their “diploma” and head for the reception that followed.

Yes, today we celebrated Brian’s last day of elementary school, but we are also celebrating his incredible functional progress in just the past 13 days and his continued healing and recovery from topical steroids.  There is still some healing to go, but he has come a long way since his incapacitated state during Thanksgiving. Praise the LORD!

Happy Graduation, Brian!  You have a bright, TSW-free future ahead of you!
Love,
Mom and Dad

“Everyone may eat and drink, and find satisfaction in all his toil–this is the gift of God.”   Ecclesiastes 3:13

Happy Birthday Brian!

“You make me glad by your deeds, O LORD; I sing for joy at the works of your hands.”  Psalm 92:4

Brian had an incredible weekend from start to finish. It started with being able to get to school “early” on Friday 5/30 to take his SOL test and then playing well that night in a baseball game with no itchfests.

We woke him up at 7am on Saturday (previously unwise) to get to Williamsburg by 9am to play in a 2-day tournament. His team played a doubleheader and were done with Saturday games by 3:00pm, so we and some friends went to Busch Gardens for a few hours.  After a late dinner, we got back to the hotel, and Brian fell asleep around 11:30pm.  His scratching was minimal during the games and did not require cold packs or ice cubes.

Miraculously, he slept from 11:30pm to 9am Sunday morning without needing help to manage his scratching! Thank goodness for late games! Warmups for the 12:15pm game started at 11:00am. After winning the first game, we had a surprise birthday party for Brian between the first and second games. Brian turned 11 that day.

Happy 11th Birthday, Brian! June 1, 2014

Happy 11th Birthday, Brian! June 1, 2014

This weekend we were blessed with good sleep, minimal scratching, absolutely glorious weather, cool temperatures, perfect timing of the games, lots of shady areas at the ballfields, and great company.  In between games, Brian was able to run and laugh and play with his teammates and their siblings. It couldn’t get any better than this.

Well, it did get better: Brian’s team beat three more teams on Sunday and won the Virginia State Championship! Happy Birthday Brian!

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“Best birthday weekend in my entire life!”–Brian

For those of you who are undergoing topical steroid withdrawal, you have hope. Stay strong; keep the faith; persevere. Life does get better!

“‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future’”                                                              Jeremiah 29:11

A Prescription to Sleep In

At the start of May, Brian had a few days where he was able to get to school by 9:45am without my waking him out of a sound sleep to get up. Yay! Progress! We thought he was just going to do better and better each day and meet his goal of getting to school on time and staying the full day without an itchfest meltdown.  Unfortunately, last week’s flu and the fever from the week before just set him back. Now, he is sleeping soundly until at least 9:00am or 9:30am again, and we are lucky to get him to school between 11am and 12pm.

Brian’s teacher/homebound instructor has been so wonderful, accommodating, and understanding, and I just hate burdening her with the unpredictability of it all! She has enough on her plate with 30 students.

Yesterday Brian started school at 11:30am. A few hours later, I was signing him out at 2:45 pm for a doctor’s appointment, and a staff member commented, “So, Brian’s coming in just whenever he wants to now?” She probably did not intend anything by it, and I was overly sensitive about the tone, but this kind of upset me since it’s not like we want to interrupt class at all hours of the morning! This is part of his physician-approved treatment plan; did she not get the memo?

I’m sorry he can’t get up early enough to ride the bus and get there before the bell rings. I’m sorry I can’t get him there at a consistent time every day yet. He’s still scratching through the night, breaking up his ability to sleep soundly. Then I had to wake him up from a sound sleep today to get him there “early” at 9:15am (school bell rings at 9:10 am) for an SOL test. He can do this for one or maybe two days in a row, but we have found that his body then crashes and needs the longer sleep in the mornings on the following days.

Though Brian is functioning better, his body clock is still a bit off, and his body is still healing, which happens mostly during sleep. Since he is not sleeping soundly at night, he needs to sleep as long as he is able whenever he does fall asleep, which, unfortunately, is during school hours.

Getting to bed earlier doesn’t work either–even when he wakes up early that day–because his body will generally not let him fall asleep before 10:30pm. However, this is a great improvement from the 3am and 6am sleep times from a few weeks and a few months ago!

It is a challenge to balance the needs of your child against societal expectations. I am going to do what my child needs for his body to heal, and right now it needs all the sleep it can get.  We will continue to get him to school as soon as he can get there and save the forced “shake awake” early rising for SOL testing days. After all, this, too, is just another step forward on his road to recovery.

“The LORD is my helper; I will not be afraid. What can man do to me?”   Hebrews 13:6