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)
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 months, 10 months and 18.5 months TSW
