2 Home Runs and 35 months TSW

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 (scratch scale) 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

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Edisto Beach, SC

Edisto Beach, SC

 

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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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!

 

Eczema Herpeticum and 27.5 months TSW

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Don’t let TSW keep you down!  1/24/16

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1st snow of 2016 (1/23/16)

IMG_2157A belated Happy New Year! As I write this post on a snowy day, 27.5 months into Brian’s Topical Steroid Withdrawal (TSW) journey, I can’t help but give thanks and praise to God again for finding the International Topical Steroid Awareness Network (ITSAN) in the Fall of 2013 and for the many friends I’ve made in the TSW Facebook support groups. The support and exchange of information with TSW warriors and parents of other child TSW warriors like Brian have encouraged me to keep fighting for:

1) Recognition in the research and medical community of Red Skin Syndrome/Topical Steroid Addiction (RSS/TSA) and TSW in children;

2) Appropriate labeling of products containing topical steroids (TS); and

3) A change in the American Academy of Dermatology (AAD) atopic dermatitis treatment guidelines that facilitates the prevention, early detection, and treatment of RSS/TSA and TSW in children and adults with eczema.

We’ve got a busy year ahead! 

Today is Brian’s 842nd day free of topical steroids (TS) for eczema. Overall, he is functioning very well, participating in extracurricular activities and school like any other 7th grader. His skin is still healing, but the skin and itch continue to be a seasonal challenge. “You need to follow summer,” says his pediatrician, who has been supportive in this process. So true. Brian’s skin is almost normal in the summer months as seen in these pictures from 2014 and 2015. Florida or the Bahamas may be in our future….

As you may know, the fall and winter months are particularly hard on the skin, especially eczematous skin. There is an increase in dryness and itching, and distinguishing between “true eczema” and “residual TSW” at this later stage is tricky. However, I believe he’s still got a bit of both. The underlying eczema seems to be reemerging (dry skin, itching), especially with the below freezing weather we’ve been having lately, but along with it continue signs and symptoms characteristic of TSW: Full-body shedding, red sleeves, elephant skin, “ooze” smell during night sweats. Pictures are below. (See FAQs for a full list of TSW symptoms.) This was particularly evident during Brian’s first experience with eczema herpeticum right after Christmas.

SKIN INFECTIONS  Thanks to the discussions about eczema herpeticum (EH) in the Topical Steroid-Red Skin Syndrome Support Group and with other moms on Facebook, I was able to suspect it as soon as Brian showed me those tell-tale vesicles and get him to his pediatrician right away. EH is a serious skin infection that can be life-threatening if not treated. Thankfully, his pediatrician was knowledgeable about it and prescribed timely treatment. He also said there was likely a secondary staph infection. Brian has not had a skin infection that required medication in quite a while, and this time he got a double whammy! Rx: antiviral +antibiotic+good skin/wound care.

Details and treatment are found in the LOG under Day 841, but the progression photos are below. It’s incredible how quickly the acyclovir cleared up the vesicles and pustules–gross! I know, I know!–and the scratching was noticeably decreased. I’ve always liked Brian’s getting a fever because he is never uncomfortable, and he stops scratching. He did develop a slight fever  (<24 hrs) which gave his skin a little respite from the scratching, but we knew his fever was breaking when he started scratching again, though much less than before treatment.

CLICK on any picture to enlarge.

 

 

 

 

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SIGNS and SYMPTOMS that suggest TSW continues

1) Elephant skin

2) Red sleeves, edema, and blanchable erythema

3) Full body dryness, flaking, and measurable shedding of skin. (See shedding pictures in a past post.)

What’s horrific but fascinating about TSW is the marked and frequent changes in skin quality and appearance. Brian’s skin texture on his back and extremities has fluctuated between pebble grain, coarse sand paper, plasticky dry, and fine sandpaper. Just the other day, his entire back felt as soft and smooth as a baby’s bottom for two days. Now, it’s back to a pebble grain, sandy texture again. This is why we need doctors to study RSS/TSA and TSW. WE see all this rapid skin cycling 24/7, 365, but they can’t see the full sequelae in a brief clinic visit. Current pictures of his feet show a disappearance of the red sleeves, for now.

Even though he’s over the skin infection, we’ll continue our treatment regimen outlined in Day 841 in the Log. The main goals are to keep the skin clean, hydrated, and infection-free and to minimize itching and the damage caused by scratching, while enabling him to get adequate sleep and be as active and functional as he can be. Yeah, no problem. 😉

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"Hi Ho, Hi Ho, it's off to work we go...." 1/25/16

                                  “Hi Ho, Hi Ho, it’s off to work we go….”

Stay strong, persevere, and keep the faith!

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world!”  John 16:33

 

TSW Update: 26 Months Free of Topical Steroids

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!

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Cross country (Brian 2nd from left)

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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

23 months TSW and back to school 2015

You know you’re a TSW-obsessed mama when your child’s 1st-day-of-school pictures look like this:

First day of 7th grade 9/8/15. Have a GREAT year, Brian!

“A longing fulfilled is a tree of life.” Proverbs 13:12

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

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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

TSW Champions Beyond the Itch

Brian and his team, the Virginia Breeze Elite, competed in their final 11U tournament of the 2015 season: the Triple Crown Summer Nationals in Myrtle Beach, SC. During the week, the temperatures were in the mid to upper 90’s and the humidity so high it was stifling. One day the heat index was 108 degrees, yet the boys played on, and Brian’s skin and itch were not an issue. They went undefeated, battling back through games that should have knocked them out of the tournament. Brian played in one game that lasted 9 innings, after a score of 0-0 in 6 innings of phenomenal play by both teams!

Whether you are in the horrific early stages of Topical Steroid Withdrawal (TSW) or in the later stages, wondering if it’s still TSW or now “just eczema,” don’t lose hope; don’t give up! Focus on the life beyond the skin and itch, and–itch or no itch–live each moment to the fullest. Faith. Patience. Perseverance. Victory will be yours!

In winning the Triple Crown Summer Nationals in Myrtle Beach, the Virginia Breeze Elite finished the season 42-1, taking home 7 of 7 11U championships in 4 states, besting teams from Ohio, Delaware, Maryland, NC, VA, Georgia, and Venezuela. Next goal: Cooperstown 2016!

In winning the Triple Crown Summer Nationals in Myrtle Beach, the Virginia Breeze Elite finished the season 42-1, taking home 7 of 7 11U championships in 4 states, besting teams from Ohio, Delaware, Maryland, NC, VA, Georgia, and Venezuela. Next goal: Cooperstown 2016! (Brian is in the front row, last on the left.)

“Thanks be to God! He gives us the victory through our LORD Jesus Christ.”                     1 Corinthians 15:57