39 months TSW and Happy New Year!

Darth Brian ready to take on the big hill! 1st snow 1/2/2017

1/8/17               Darth Brian ready to take on the big hill!   (wearing sunglasses and breathe-easy ski mask)       1st snow of 2017 

Let it snow, let it snow, let it snow!

The start of 2017 finds us in a much better place than this time last year, when Brian was recovering from eczema herpeticum and a TSW flare (see post), and in a much, much better place since he started TSW at the age of 10.

January 6, 2017 marked the 1189th day–3 years and 3 months–since we stopped using topical steroids on Brian for eczema because they had ceased to keep the eczema under control. (Read About it). Despite the long, exceedingly difficult journey and cruel rollercoaster nature of Topical Steroid Withdrawal (TSW), it was the right choice for Brian’s skin and health.

Today, he’s a healthy, thriving 8th grader, and his skin is stronger and in better condition than it was when he was using topical steroids. NOT perfect, but better. After changing and shaking sheets daily for over 2 1/2 years, I enjoyed a 3-month break from this ritual (Aug.-Nov. 2016) when shedding was imperceptible, almost normal. Eczema scratching comes and goes but is no longer debilitating (Log 1/8/17 update). He can sleep at night and wake up for school in the morning with minimal scratching. No more hollering for an ice pack in the middle of the night, though he does ask me to scratch his back for old time’s sake. With the late Fall and Winter weather, I’ve noticed increased dryness and some mild flaking that didn’t start until mid-December. Elephant skin, ooze, and red sleeves have not reared their ugly heads, but there are a few cold months left, and these signs of residual TSW may yet resurface and disrupt our lives once again.

Of course, nothing–especially skin–is perfect, and acceptance of whatever state we’re in brings a sense of peace, but we praise God that our lives no longer revolve 100% around his skin. Right now, we are comfortably managing eczema and are thankful for how far Brian’s come. TSW has shown us we can handle and get through whatever comes our way. And so can you. We are never alone. Stay strong; have hope; keep the faith!

“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior.”  Isaiah 43:2-3

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SKIN/SCRATCH MANAGEMENT at 39 months TSW (links to management for 5, 10, and 18.5 months TSW also follow)

8th grade Cross Country 10/26/2016

Warmer days……8th grade Cross Country 10/26/2016

Brian’s current Skin/Scratch regimen is similar to that posted 9/16/2016, with changes reflecting whatever his skin requires at the particular time. Goals remain the same, but interventions may change as weather and skin needs change. The following regimen works for Brian. However, people in various stages of TSW may require different treatments, and it is important to test or know what you may or may not react to. Every person is different; you need to find what works best for you.

Goals:

  • To keep the skin clean, hydrated, and infection-free
  • To utilize effective itch/scratch management to prevent breaks in the skin (to prevent infection)
  • To support the body/skin health and healing by taking needed vitamins/supplements, monitoring sugar and dairy intake, and getting proper nutrition/hydration, exercise, and sleep, and utilizing stress management and deep breathing techniques

Treatment/Skin Care Routine: At least once daily shower, followed by application of organic coconut oil (face, extremities, trunk). Hot summer months require a “lighter” moisturizer or no moisturizer at all. During winter, can use thicker aquaphor or petroleum jelly for nose, cheeks, ears, and parts exposed to cold.

Sunscreen: Organic, virgin coconut oil

Infection control measures:

  • Take apple cider vinegar (ACV) bath (10 minute soak) or 20 minutes in microsilk tub bath 1-3 times per week, followed by shower/rinse off, and moisturize with coconut oil or nothing. More frequently if flaring.
  • Spray sovereign silver, as needed, on any open areas or broken skin.
  • If these conservative measures fail, and skin/itch don’t improve, consult health care provider.
  • Change sheets daily.

Vitamins/Supplements/Diet: Vitamin D3, Omega 3 fish oil capsules, recommended by pediatrician;  pantothenic acid, DAO histaminase, B complex, culturelle probiotic–supplements prescribed by naturopath to address methylation issues (difficulty processing histamines and sensitivity to eggs, dairy, and fruit-sugar combos) and provide gut support; try to monitor dairy, egg, and processed sugar intake 

Itch/scratch management: Generally 0/5 to 2-/5 scratching. Some short episodes of   3-/5 with fatigue or stress or who knows what. (See log for scratch scale.) Cut and file fingernails short. Deep breathing/relaxation techniques, acupressure points, ice packs, distraction. He will use benadryl liquid as needed but hasn’t used it in months.

If needed for >3/5 scratching: Dr. Wang’s purple eczema ointment, The Home Apothecary’s lemongrass balm, moisturizer (e.g., coconut oil), or sovereign silver gel/spray

Remaining TSW symptoms: (compare to March 2, 2014 at five months TSW and 28 months TSW. )

  • Shedding—As in past 2 years, progressive decrease in visible, measurable shedding from end of June to Aug. This year it was June to barely perceptible in Nov. 2016. Restarted slightly measurable shedding (<1/16 teaspoon) around mid-December, from increased skin dryness. (Is this still TSW or “just” eczema? I’m leaning toward eczema))
  • Elephant skin—Not evident since this time last year January 2016
  • Red sleeves, edema—None noted in upper or lower extremities since January/February 2016 (feet) 
  • Ooze smell—None since June 2016

Skin quality:

–Back is soft, smooth but has intermittent eruptions of erythematous papules scattered on posterior scapulae and low back–haven’t pinpointed the trigger

–Shoulders, elbows, knees textured with scattered hypo-pigmentation from scratching on tan skin. Dry but no obvious flaking. Sometimes erythema with neck scratching

–Still with periodic small breaks in skin on shoulders, elbows, hands, or knees from scratching/picking; skin fluctuates from soft and smooth to pebble grain

–Able to play in the sun, heat, and snow without itchfests

Function: Sleeping through the night (roughly 10:30p-7am) and staying an active 8th grader.

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Click these links to see Brian’s treatment/regimens at 5 months10 months and 18.5 months TSW

28 Months TSW

Twenty-eight months after stopping topical steroids (TS), how can you tell the difference between topical steroid withdrawal (TSW) and “just eczema”? We in the TSW community ask this all the time, as do some dermatologists and other doctors who can’t believe that TSW could last so long. I agree: How in the world could TSW possibly last this long!?!?

That’s why we’re asking dermatologists and researchers to study TSW in children and adults who are going through this lengthy withdrawal-healing process. They could gather lots of valuable information from the TSW support pages, pictures, and blogs and interview the affected adults and caregivers of children who are going through TSW. From this they could create a picture of this iatrogenic condition and formulate hypotheses on which to conduct more formal research.

I’m not complaining, mind you, or saying, “Woe is me (Brian),” because Brian pretty much has his life back, and skin care and itch management is part of our routine. I just want answers.

My questions to doctors and researchers who believe TSW is just eczema are these:

  1. Does eczema cause full-body, visible, measurable flaking and shedding of skin? TSW does. The pictures below show just the skin that shed overnight.
  2. Does eczema cause full-body erythema/flushing at one moment then return to normal-colored skin the next, then back to flushing again? It still happens now–28 months after stopping TS.
  3. Does eczema result in plasticky “elephant skin”? It happened early in TSW and it’s happening now, more than 2 years after stopping TS.

    4. Does eczema result in “red sleeves” in  arms/wrists and/or feet/ankles? TSW does.

    5. Does eczema result in heat radiating from the body at night like and TSW-ooze-smell sweating? Still going on most nights.

    So, if these signs and symptoms are not TSW and not eczema, what is causing this continued manifestation of signs/symptoms that were present in the early months after stopping TS? Is it just the long-lasting adverse effect of TS use?

    AND if doctors and eczema researchers have seen eczema that presents like signs/symptoms 1-5 above in their patients, are those patients using topical steroids? If so, then how can one definitively say that these signs/symptoms in the patients were NOT caused by TS?

    Food for thought and questions to ask your healthcare provider next time. . . .

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Life after eczema herpeticum. . .Getting through the challenges of Winter weather… Spring is right around the corner…Current regimen/treatment follows the pictures below…Don’t let TSW keep you down!  Look Beyond the Itch!

“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

2/1/16

2/1/16  Morning

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1/30/16

1/30/16  Night time

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1/30/16 night time

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1/30/16

Goals: To keep the skin clean, hydrated, and infection-free; itch/scratch management

Treatment: Twice a day shower/bath followed immediately by application of either coconut oil, sunflower oil, or lemongrass balm/Zinc balm combo or a combination, depending on the condition of the skin. Wet wrapping (WW) both ankles and tops of feet at night with filtered water and dry sterile dressing; WW wrist and hands as needed if they are excessively dry or have open areas.

Vitamins: B complex, 4000 iu D3, Zinc, 2 Nordic Naturals fish oil capsules

Itch/Scratching: varies between 0/5 to 2+/5 scratch scale (see Log), stress scratching; benadryl PRN, ice packs, moisturizers (sunflower oil, coconut oil, aquaphor, and/or The Home Apothecary’s lemongrass balm), itch-B-gone spray; deep breathing and relaxation techniques, CBT, acupressure points

Function: Excellent! All A’s in honors classes, playing basketball, practicing and conditioning for baseball, x-box, RC cars, able to get up and ride bus to school with friends.

Look Beyond the Itch!

 

705 Days Free of Topical Steroids! The TSW Journey continues…

As a last salute to a summer that went by way too fast, we took a cruise with some friends to the Bahamas and visited my mom and family in Charleston for 8 days of sun, food, and fun. I decided to leave my militant TSW rituals at home for the week to see how Brian’s skin and scratch would fare (see Log dated 8/30/15). Maybe it’s just a summer thing–like last year–but his skin got better and his scratching was no worse despite heat, sweat, sun, and water. See pictures dated 8/27/15. It was a nice vacation from our TSW routine and “itch-think”, and Brian spent all his waking hours playing ping pong, eating soft serve ice cream, and having a blast with his friends.

We’ll continue the experiment of no vitamins/supplements while monitoring energy, function, skin, and scratch. Hopefully, we’ll be able to discontinue the daily vitamins and supplements (which is like pulling teeth to get him to take anyway) which will simplify our routine.

TSW is very unpredictable, especially in the later months like 22 and 23+ months out. You think you’re finally done with the cycles and are healed, then BOOM! the full-body symptoms are back again, as if you were in the horrific early months of TSW. For this reason we are thankful for any and all good skin and itch times.

October 2015 will be Brian’s 2-year anniversary of stopping TS. Beyond the itch, he has definitely come a long way. Praying for strength, endurance, perseverance, peace, and healing for all TSW infants, children, adults, and caregivers. Never lose hope!

Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not be faint.”  Isaiah 40:31

Sunset in the Bahamas 8/26/15

Sunset in the Bahamas from the highest deck on the ship (taken by Brian) 8/26/15

8/26/15

8/26/15   Paddle boarding in Freeport 

Paddle boarding without a paddle in Freeport, Bahamas 8/26/15

Paddle boarding without a paddle 

Ping Pong on the beach

Ping Pong on the beach

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God’s gift of good friends

X Box and TSW

At 14.5 months into topical steroid withdrawal (TSW,) my husband and I thought Brian’s itchfests and restless nights were over, but we were wrong. We are now beginning to dread, once again, when the sun goes down and night comes because with the night comes more scratching and tossing and turning and sleepless nights for all of us.

We’re back to using ice packs for itching, hot packs for warmth, and the new addition to our scratching arsenal: the therabrush for scratching “gently.” Theoretically all this works, but in the morning the results are in: abraded legs and red bumps; a few open cuts and scratches; dry, flaky skin; and at least 1 teaspoon of shed skin–yes, GROSS! and, yes,  I did measure just to see. At least it’s not a tablespoonful like in the early days of TSW.  My arms should be getting tone from the daily sheet shaking, and we almost wiped out another washing machine due to the numerous loads of daily laundry we’ve had to do in the past 14 months.

Nonetheless, the healing continues, and we just try to focus on the good stuff that’s going on, too, and be thankful for how far Brian’s come.  From a year ago, homebound with fatigue; loss of hair; swelling; thin, oozing, macerated skin; burning, stinging skin; and “red sleeves” to….

edema 11/29/13

Facial edema, oozing, thin skin

November 30, 2013 "Red Sleeves" Redness stops at palms--classic symptom of topical steroid withdrawal

November 30, 2013 “Red Sleeves” Redness stops at palms–classic symptom of topical steroid withdrawal

 

being able to attend school full-time, run cross country for the first time, play baseball, basketball, and have fun and run around outdoors like a regular 6th grader. Though still itchy and flaky, his skin is stronger than last year, and the burning, stinging, and red sleeves are gone. Yes, beyond the itch, healing is happening, even though it’s like watching the grass grow!

Another good thing about TSW–and technology–is that we have met some truly wonderful people, from all over the US and the world, whom we never would have met, had it not been for this life-stopping journey we share.  During his Christmas break from school, Brian has been playing X Box with another fellow named Oliver who is going through month 8 of topical steroid withdrawal. Oliver lives in the UK. They are about the same age and get along really well.

They sure do miss their other TSW buddy, Faiz.  Peace, comfort, and healing to you and your family, my friend.

 

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Oliver in the UK playing x-box with Brian in USA 12/24/14.

Oliver in the UK playing x-box with Brian in USA 12/24/14.

 

 

 

 

 

 

 

 

 

Don’t let TSW get you down! Play X-Box with a friend, and….

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make banana splits!

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!

Ten Months Free of Topical Steroids!

“Trust in the LORD with all your heart and lean not on your own understanding;
in all your ways acknowledge him, and he will make your paths straight.”
Proverbs 3:5–6

Trusting in God and acknowledging him always during this 10+ months of eczema and topical steroid withdrawal (TSW) has helped us make it through and actually live rather than just exist during this painful, itchy, exhausting ordeal. If it were not for our faith and the prayers and support of family and friends, our experience may have been much different. Certainly, Brian probably would have healed eventually anyway because that’s the nature of TSW, but the scars he would have taken away from this experience may have been more than just physical. I am thankful for the lessons learned and the healing that has happened thus far on Brian’s road to recovery, and we trust that Jesus will continue to be with us–encouraging us, supporting us, carrying us, and loving us– every step of the way!

Don’t go it alone.  If you or your child or spouse is undergoing red skin syndrome or topical steroid withdrawal, don’t hesitate to get support from family, friends, priest or pastor, ITSAN or ITSAN Forum, or other TSW blogs. With TSW, this misery needs company!

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SOOOOO, where have my ramblings been these past few weeks? Locked in my head as we traveled, waiting for me to get access to a computer to blog on since other electronic devices were a bit problematic for me.

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7/27/14   Brian is in the front row with the stripe on his pant leg.

It’s nice to go on vacation, but it sure feels good to be back home. We just got back from  Florida where Brian and his baseball team played in a tournament at ESPN’s Wide World of Sports Complex near Disney.  We also made a side trip to South Carolina and were able to visit half of our family. (Hope to see you next time, MC!)

It was 10 days full of hot and humid weather, good baseball, lots of pool time, theme park rides (and lines,) late nights, early morning wake-ups, and fun with family and friends. Brian had a blast, and my husband and I were so very happy for him.

7/29/14--Chicken Champs!

In the pool after a game   7/29/14  Chicken Fight Champs!

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Aaaarrrgh! 7/30/14 Universal Studios

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Turkey leg, anyone?

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Sea World    7/31/14

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Last evening in Florida 8/1/14

During this vacation, Brian had a slight increase in scratching–SS 2+/5 to 3-/5–compared to 1/5 to 2/5 (See LOG for Scratch Scale)— probably because our diet went on vacation too. We ate an increased amount of sugar, milk, and gluten in the form of donuts, ice cream, soda, grilled cheese sandwiches, chips, and other “fun but deadly” foods that we had successfully been avoiding prior to to our vacations. We had hardly any green nutrition, unless you count trident spearmint gum (green packaging.)

It seems like the food was the culprit, but maybe it’s just one of those mini-flares. Not a big problem, though. At least Brian didn’t revert back to uncontrollable itchfesting. His skin tanned during vacation, and there are lighter areas where he scratched the tan off when he did get itchy, giving his skin a mottled appearance.

How can we say he is getting better? With TSW, you can get so caught up in how the skin looks or how much itching there is that you can overlook the other healing that is also happening. It may be many more months before Brian’s skin is fully healed from the damage done by topical steroids, resulting in itching that flares, calms down, and flares again many times. If all we focused on is “When will his skin/itch be better?” we would be disappointed a lot. So, with Brian, we try to look beyond the itch and skin and focus on the improvements in his function, sleep, energy, and emotional state. The skin will heal when it heals.

How did he do? His function and sleep was “11-year-old-boy-at Disney” normal, and he had lots of energy and did not miss out on any sweating, fun, food, or activities.  As we have done in the past month or two, we used ice only for drinks and not for itch/scratch management. YAY!  I can get used to this. 🙂

Today is Brian’s 306th day off of topical steroids. I added some body part pictures to the “Pictures Then and Now” page.  Because of the mottled skin and possible flare, one may think, “It’s gotten worse.” However, as Brian said after looking at his pictures, “It may look bad, but it (skin) feels really good now,” then he ran off to play.

Current Treatment:

1) Vitamins/supplements to address gene mutations (B complex, molybdenum, glutathione, vitamin D3, magnesium, and zinc)

2) Apply coconut oil occasionally to itchy or dry areas

3) Get 7-9 hours sleep at night and plenty of sunshine, exercise, and active play

4) Stay hydrated

5) Experimenting with trying to cut down or cut out gluten, sugar, and dairy

Ten months after stopping topical steroids, Brian
1) is doing everything he used to do prior to TSW;
2) is getting 7-9 hours of sleep at night;
3) is sleeping more soundly; 
4) has a more “normal” body clock or sleep-wake cycle again; and
5) is scratching and shedding less.

One day, God willing, the itch/eczema may go away for good, and beautiful skin may follow. If not, I am still at peace with the progress Brian has made, and I am thankful that, in the ways that matter to me, my “little” boy is back! PTL!!!

Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you.”  2 Thessalonians 3:16

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Skin-wise, one major improvement that Brian can see and feel has been in his feet and ankles: 99% less itchy, fewer cuts, and decreased swelling.

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NOW: 8/6/14   Less swollen (veins visible), hair has returned, fewer cuts, hardly ever itchy

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THEN:  5/14/14   Slightly edematous, hair just emerging, constantly and insanely itchy–>multiple cuts from scratching

 

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NOW: 8/6/14   Right ankle

3/11/14  Right ankle

THEN: 3/11/14   Right Ankle, hairless leg, cracked and flaky skin

8/6/14 Left Ankle. Stubborn dry spot that Brian likes to scratch and pick at...

NOW:  8/6/14  Left Ankle with stubborn dry spot that Brian likes to scratch and pick at…

Left Ankle 4/2/14

THEN: Left Ankle 4/2/14–both looking better than in March

FOR MORE PICTURES, CLICK PICTURES Then and Now

Flares and a Happy Father’s Day

After a week and a half of minimal to no scratching during baseball games in pretty hot weather, Brian was scratching a bit more today while on the field compared to the past few baseball games. A little itch flare seems to be starting up again, but it is nowhere near the incapacitating intensity of past itching. I had my cooler full of ice packs, ice cubes, and iced towels ready for the itchfest, but it never came. What an improvement from a few weeks ago.

We spent the weekend on the ballfields with good company and beautiful weather, and today, Brian and his teammates gave their dads the ultimate baseball dad’s Father’s Day gift: a full day’s worth of baseball and another championship trophy to add to their collection. Go Breeze!

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Virginia Breeze Elite with dads, a granddad, and a brother

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