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51 months TSW and a Belated Happy New Year!

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During the horrific early months and years of TSW, the nights were so dark,  long, and lonely, and the days–though welcomed because of the light–were just as draining and frustrating, with no end in sight. Now here we are, four years later, and I’m amazed how fast the time has flown by!  Brian started TSW as a 10 year-old fifth grader, and he’s now a 14-year-old 9th grader.

                September 2013 just before TSW^          ^September 2017 51 months TSW

How’s he doing? Well, the cold, dry winter atmosphere has resulted in the usual dry skin; the added experience of being a freshman has contributed to increased stress scratching; and cat dander still results in itching, red patches, and allergy symptoms (benadryl to the rescue!). However, the last few TSW signs/symptoms I’ve been monitoring–red sleeves, oozing, elephant skin, profuse skin shedding–have not recurred this time. Now, of course he gets the skin flakes from the dry skin, but it doesn’t result in tablespoons of skin on the sheets in the morning. In fact, my arms are getting flabby because I’m no longer changing and shaking out sheets every day. I’ll exchange flab for TSW any day!

I posted the most recent progress photos in Pictures. Certainly, the skin is NOT perfect, nor will it probably ever be because dysfunctional skin is in his genes, thanks to me and my hubby. He also probably still has atopic dermatitis–which he chooses to manage without steroids and by not worrying about it. However, he is healthy and active and living life. What more can we ask for our child? 🙂

If you are just starting on this TSW journey, you are not alone. It’s a long, painful, difficult rollercoaster process, but for the health and welfare of your child and/or yourself, withdrawing ineffective topical steroids is essential for the body to heal. In addition, appropriate skin/wound care, nutritional, medical, and psychosocial support are needed to address the signs, symptoms, and sequelae of TSW. Find a knowledgeable or at least open-minded doctor who can support you during this process and communicate with others who understand what you’re going through.

You DO have hope for healing!

“I can do all things through Christ who strengthens me.” Philippians 4:13

Beyond the Itch

39 months TSW and Happy New Year!

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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 months, 10 months and 18.5 months TSW


Beyond the Itch

Eczema and Skin Management at 35 months TSW (Topical Steroid Withdrawal)

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Skin and itch management at 35 months TSW seems pretty simple compared to our treatment and skin/wound care routine at 5 months TSW seen here.

Brian’s current regimen has been as follows. This will likely change (again) as the weather gets cooler, the skin dryer, and the “eczema season” begins once more.

Goals:

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

Treatment/Skincare Routine: At least once daily shower, followed by application of organic coconut oil (face, extremities, trunk). Hot summer months require a “lighter” moisturizer.

***Lately Brian’s been able to go without using coconut oil (or any) for moisturizer. He still uses it as sunscreen for face and exposed areas when playing baseball.

Infection control measures:

  • Apple cider vinegar (ACV) bath (10 minute soak) or 20 minutes in microsilk tub bath 3-5 times per week,  followed by shower/rinse off and coconut oil or nothing
  • Spray sovereign silver, as needed, on any open areas or broken skin.
  • If all other measures fail and skin/itch worsen, short term oral antibiotics have helped, but thankfully he hasn’t needed them much. In fact, he needed antibiotics more often when he was on topical steroids for his eczema.
  • Change sheets every day

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 (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 such as coconut oil, or sovereign silver gel/spray–haven’t needed these lately

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

  • Shedding—As in past 2 summers, progressive decrease in visible, measurable shedding from end of June to now (beginning of September). Now shedding is almost imperceptible even when shaking sheets in morning.
  • Elephant skin—not evident in July, August, or early September
  • Red sleeves, edema—none noted this summer in upper or lower extremities compared to January/February 2016 (feet) 
  • Ooze smell—light to strong ooze smell in May and June but none too obvious from July to now. Heavy night sweating with faint ooze smell was also absent the past few months.

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 hypopigmentation from scratching on tan skin. Dry but no obvious flaking

–Still with periodic small breaks in skin on shoulders, elbows, hands, or knees from scratching/picking

–Able to play in the sun and heat and sweat like the best of us–without freaking out

See 9/6/16 pictures

Function: Sleeping through the night (roughly 10:30p-7am). Staying active with 8th grade, travel baseball with 2x/week practice,  cross country, church, golf (which he took up on 8/30/16). Overall, he’s doing well despite “not perfect” skin, but then, no body’s perfect!🙂

We are very thankful that Brian’s skin is no longer limiting his participation in or enjoyment of activities. So, is TSW finally over? Only time will tell. Fall and winter are just around the corner, and we’ll have to wait and see what symptoms arise with the lower humidity and cooler temperatures.

In the meantime, we’ll continue to praise God for his healing touch, live beyond the itch, and “Play ball!”

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

Psalm 92:4


Beyond the Itch

2 Home Runs and 35 months TSW

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It’s hard to believe that it’s already September! Summer goes by fast when you spend it traveling from one baseball tournament to another, a family reunion, and two weddings–in 4 different states. Thankfully, we’ve been able to do it all, and Brian has weathered the heat and humidity of summer like a champ.

Brian’s team, the Virginia Breeze Elite, brought home the Cal Ripkin championship trophy and came in the top 8 of 104 teams at the week-long Cooperstown tournament in NY. The stay in the barracks and uniforms washed by the staff challenged his skin, but he at least came out no worse than he went in: 0/5 to 2+/5 ss and minimal shedding.

Also, he hit his first and 2nd home runs ever that week, contributing 2 to the team’s 44. He batted .611 in 6 pool play games–a fitting end to his “little field” career and a testament to how far he’s come in his TSW journey. Thank you, Jesus!

“But one thing I do: Forgetting what is behind and straining toward what is ahead…you should stand firm in the LORD, dear friends!” Philippians 3:13, 4:1

Virginia Breeze Elite 12u Cal Ripkin Champs

Virginia Breeze Elite 12u Cal Ripkin Champs (Brian is kneeling, 2nd from the right)

Cooperstown 2016

Cooperstown 2016

fullsizerender

Edisto Beach, SC

Edisto Beach, SC

 


Beyond the Itch

39 Months TSW/ BBC Eczema Documentary

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Hi guys, this blog is long overdue an update!

So what’s going on with me?

Well I’m afraid to say, it isn’t exactly great news. I’ve actually been putting off talking about it because I don’t want to discourage others. But about a month ago, I began to get a really itchy face and the band around my tummy where my top had been tucked into my skirt also triggered a heat rash reaction, due to the hot weather we have been experiencing as of late.

I figured with time and patience it would disappear on it’s own, as it usually does. However a month later it has instead spread all over my body; my face, neck, chest, arms, torso, legs… everywhere.

I went to a walk-in-centre and was given a weeks worth of antibiotics as we both assumed it to be an infection. They didn’t even touch it. This Tuesday just past I went to the doctors and all she could offer me were steroids, emollients and an extra antihistamine because she felt it looked more like an allergic reaction. Not great. At this point I’m actually debating using oral steroids just to help clear my system but the other part of me is screaming ‘NO!’ because it would ruin years of hard work if I were to rebound, and also get eczema herpeticum.

I’m currently having to take time off work because it is virtually unbearable. I think part of this flare-up is due to the fact that I now no longer have time to heal, because I work a full time job and am always on the go. So having a few days off should in theory help me… but it just seems to be getting worse. The heat is not helping and I’m just a poor tired mess.

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In other news. The last time I went to see the dermatologist, back in May, she told me that they had forgotten to contact me 1.5 years ago to tell me that I was severely deficient in Vitamin D. I can’t even. Sounds about right though…

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On a slightly more positive note; another thing that happened that I should really have blogged about sooner was that a fellow from the BBC contacted me in regards to making a radio documentary about eczema sufferers and what we really have to go through etc. I was invited to the studio in York and nervously gave my view point. There was a lot I didn’t manage to say as I tend to burble when put on the spot and probably also a lot I didn’t put across properly… but if you fancy a listen it is airing on bank holiday Monday (29/08/16) at 09:00 on http://www.bbc.co.uk/radiosheffield and later on at 18:00 on http://www.bbc.co.uk/radioleeds.

Alternatively you can catch it via this link after 10:00am Monday morning and it will be available for 30 days.

Hope everyone else is well!

x
I Have Eczema

Giveaway Winner / 17 Months TSW

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I didn’t even realise it until just now looking at the date but today marks my 17th month without using topical steroids. Hurrah!

I am currently on yet another course of antibiotics for yet ANOTHER bacterial skin infection I’ve picked up but hey hum. I’m going to try to load myself with probiotics this time as well.

This was yesterday morning but it did proceed to worsen as the day went on. Mmm yellow crusts!

Not the most flattering picture but this is from just now. Scabby face.

So in other news – the winner of the giveaway was Tiffany! Well done you!

For those who were keen on getting a pair of the pyjamas for yourself you are in luck because Gail has been sweet enough to offer readers of my blog a special discount of 20% off! All you need to do is enter “JENNY” in the discount voucher box and you will get 20% off the price of each pair of pyjamas that you buy. This is valid until 20th November! Find them here: Find the eczema, allergy and topical steroid withdrawal friendly pyjamas here.

I can’t stress how brilliant the quality of these pyjamas are nor, how much they have helped my skin through topical steroid withdrawal because of their built in hand folds and feet to stop you from scratching.

I Have Eczema

TSW Update: 26 Months Free of Topical Steroids

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December 6, 2015 marked 26 months since we stopped using topical steroids (TS) for Brian’s worsening eczema and deteriorating health. Throughout topical steroid withdrawal (TSW) and our attempts at using various alternatives to TSW eczema/itch management, Brian’s pediatrician has been supportive. I thanked him for working with us and not belittling or disrespecting us as other doctors have done to other parents of children going through TSW. He said that his main goal is to have a child be able to live, play, have fun, and do all the things children are supposed to do; whatever route that entails does not matter as long as it works for the child. Thank God for good docs.

Current function
Energy and activities–Running, jumping, laughing, playing, and getting cuts, scrapes, and broken bones like a normal 12-year-old boy. Finished strong in travel baseball and cross country. Playing basketball for the winter.

School: Stays up way too late but manages to get up every morning to walk to the bus stop with friends–even in 30 degree weather. Picking up where he left off last year, he made straight A’s on top of all his activities and despite the eczema/TSW spectre. We’re very proud of our TSW warrior for his perseverance and attitude through the toughest of times. Give yours an extra loving hug today!

IMG_1859

Cross country (Brian 2nd from left)

IMG_1936

IMG_1851

Feet still intact 12/2/15

But return of the full-body, measureable shedding of skin and…IMG_1921

plasticky elephant skin! IMG_1932

Challenges: Fall and Winter weather wreaks havoc: increased dry, flaky skin, makes skin itchy. Return of full-body, measurable shedding of skin. At night, one can palpate the heat emanating from his body and a dampness in the sheets like the oozing days of old, but not full-on ooze. More like sweating with the slight scent of ooze.

Scratch/Sleep: Compared to Summer, the frequency of scratching this Fall has increased: 0/5 to 3/5 during the day and 0/5 to 3-/5 at night, with or without erythema. Sleep is disrupted during the night again, general between 2 and 3:30 am due to scratching or being cold, and some nights he does fine. I just reapply the balms and oils and he falls right to sleep. Then I go on the computer to do more writing and researching.

Skin quality: varies from looking good with normal color to dry, flaky eczematous areas or head to shin (basically full-body) patchy erythema with dry shedding skin. This skin change can happen day to day or within 12 hours of each other. There are fewer regular scratches on skin. Tough areas are shoulder blades from night scratching.

Still TSW or just eczema now? Only time will tell, but to me, the elephant skin, full-body shedding, and ooze-related dampness indicate that TSW is not totally done; better, but not over yet. The eczematous symptoms, themselves, do seem seasonal, though, when I compare Log entries from October-December 2014 to the skin events October-December of this year.  It’s incredible how similar they are, even to the time of onset! And so we march on….

Current treatment
1) Prayer and thanksgiving
2) Skin care
Moisture maintenance: daily shower or bath, pat dry, immediate application of coconut oil to face, neck, trunk and the Home Apothecary’s lemongrass balm or breezy balm made specially for Brian by Stephanie. Same moisturizers after school, at bedtime, and during the wee hours of the night.
Infection control: periodic ACV baths (apple cider vinegar with “the mother”) or microsilk tub baths; application of mupirocin on open cuts if needed; lemongrass balm
Itch/scratch management: File nails to the nub; moisturizers above; itch-b-gone spray; ice packs; accupressure points, deep breathing and CBT techniques (cognitve behavior therapy). Recently started using a humidifier in his room at night due to humidity level less than 40%, which is extremely drying to the skin
3) MTHFR/Vitamins/Supplements–inconsistently taking b complex, vitamin D3, Zinc, NAC and 1/2 tab glutathione
4) Diet–not as good as it could to be but at least drinking water regularly

TSW is a rollercoaster ride through hell, but as with all rollercoasters, it will come to an end. Thankfully, we have met some incredible people along the way, and the strength that we’ve gained and the lessons we’ve learned will be beneficial to us and to others one day. Beyond the itch, life is good.

Have a blessed Christmas and a TS-free, Happy New Year!
Rosemarie

“I will restore you to health and heal your wounds” declares the LORD.
Jeremiah 30:17


Beyond the Itch