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. 😉

Don’t let TSW hold you up!IMG_2154

"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

Topical Steroid Withdrawal in Children

The peer-reviewed, revised version of “A Systematic Review of Topical Steroid Withdrawal in Children Diagnosed with Eczema” replaces my original manuscript submitted to Dove Press Medical in June 2015. My “Response to Reviewers” is published here so you can see reviewers’ comments and my responses and amendments to the paper.

After some revisions in response to reviewers’ comments, they chose not to publish it because they felt “there were no articles to support the inference that topical steroid withdrawal (TSW) can occur in children” (THIS was the point of the paper: there is no research on TSW in children, and research needs to be done because children are suffering), I will publish it here and make it available to the public in the hope that someone will accept the challenge to think outside the topical steroid box and study Red Skin Syndrome/Topical Steroid Addiction and TSW in children. Prevention, early detection, and treatment ARE possible, but the blinders must first be removed.

Keep sharing your pictures and your stories! Keep educating others and save someone’s skin!

“It is God’s will that by doing good you should silence the ignorant talk of foolish men.”     1 Peter 2:15

A little break from shedding, but those feet are a real ITCH….

One would think that after 19.5 months of TSW the full-body shedding would have stopped. Completely. NOT! Well, it did from TSW months 6-9, but it came back, steadily increasing to a flurry over the winter months and, finally, this past week we’ve seen a measurable decrease.

It has decreased from about a teaspoon of nightly shedding a few months ago to  1 teaspoon 1 month ago and to about 1/8 teaspoon today. 19.5 months TSW. This is very encouraging, but I won’t put my teaspoons away just yet. 🙂

Measureable shedding started 2 months TSW 12/7/13

Measurable full-body shedding started 1.5 to 2 months TSW 12/7/13  (This is just what was on the sheet in the morning.) 

 

More skin!

More skin January 2014!

 

7/29/14--Chicken Champs!

7/29/14–Summer break from shedding

After no shedding months 8-12,  RETURN of the dreaded measurable shedding at 14 months TSW! 12/2/14

Steadily increasing in quantity to ….

Almost 1 teaspoon at 15 months TSW   1/10/15

Almost 1 teaspoon overnight shedding at 15 months TSW 1/10/15

1/2 teaspoon overnite shedding 18 months TSW 4/15/15

1/2 teaspoon overnite shedding 18 months TSW 4/15/15   (Spoon sizes: 1 tsp, 1/2 tsp)

1/8 teaspoon shedding overnight at 19.5 months TSW

1/8 teaspoon shedding overnight at 19.5 months TSW (Spoon sizes: 1 tsp, 1/2 tsp, 1/4 tsp)

 

And those FEET…well, they continue to be a real ITCH! Dr. Rapaport says itching means healing….

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19 months TSW    5/17/15     Erythema decreased slightly. Multiple excoriations due to scratching.    

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5/17/2015

5/17/2015

Must be a whole lot of healing going on!  Thank you, God, for fingers to scratch the itch.

“Blessed is the man who trusts in the LORD, whose confidence is in him.” Jeremiah 17:7

“Shedding and Oozing and Sweating–Oh My!”

For those of you just starting this topical steroid withdrawal (TSW) ordeal, here is some great advice/tips that I came across during those dark days of October/November 2013 when Brian just started TSW.

https://mylittleredwarrior.wordpress.com/2013/09/02/shedding-and-oozing-and-sweating-oh-my/

Also some good news. TSW warrior Nina A. was able to see dermatologist Dr. Lio for an appointment, and she said he was amazing and dedicated to helping all his patients, that includes the 10 TSW patients he is currently seeing. She, like Dr. Lio, is going to participate in the Itch for a Cure Eczema walk in Chicago.  Yay, Nina!

So, if you have no supportive doctors near you or if you are anywhere near Chicago (that means within 200 miles or whatever you’re willing to drive), Dr. Lio at the Chicago Integrative Eczema Center understands TSW and may help support you through it. He has no miracle cures but may provide alternative treatments to help you as your body/skin heals. It will also be a boost for the mind and soul knowing that someone who can make a difference in the medical community believes in TSW. 

We TSWers need to support him and his efforts as he pushes for recognition of TSW (aka Red Skin Syndrome) in the medical community.

Have a GREAT Weekend!

“With God we will gain the victory, and he will trample down our enemies.”  Psalm 60:12

More answered prayers about TSW and awareness!

This is a post from Abby Tai on the Eczema and Topical Steroid Withdrawal-Red Skin Syndrome Support Group on Facebook:

Hi there!  I want to share with you that I just interviewed Dr. Peter Lio, a member of the scientific advisory board for the National Eczema Association, on my podcast (The Eczema Podcast). He said that everyone on their board is aware of TSW and they will be doing a lot in the upcoming year to spread awareness about this to doctors. He said they’ll be going city to city to set up conferences to educate doctors, paediatricians, allergists & people in healthcare about TSW so that they can raise awareness of this. So it looks like we’ll be encountering more doctors who will understand TSW & be smarter about prescribing steroids. Just thought I’d share to give you all some hope that our doctors will start to become more educated in this area smile emoticon I also just interviewed the CEO of the National Eczema Association and she talks about TSW at around 17 mins here in this podcast, if you’re interested in checking it out. smile emoticon Just hoping to spread hope wherever possible! http://www.primephysiquenutrition.com/the-eczema-podcast-6…/

Woohoo!

Okay, confession time. For years I was opposed to joining Facebook because I figured it would take up too much of my time and my house would fall apart–and it has–but in the few months since I’ve joined because of Brian’s TSW, I’ve met some wonderful people whom I consider true friends, and I’ve seen a lot of good things happening with increased awareness of Topical Steroid Withdrawal (TSW) (aka Red Skin Syndrome). I’ll have to admit, my mother-in-law was right.  🙂 Thank goodness I love her to death, or that would have been really hard to put out there!

For all the big and little TSW warriors out there, your suffering is not in vain. Our prayers are being answered by an almighty God!

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

Blogs and Youtube: children and adult TSW warriors

Here is a nice compilation of blogs/videos and other helpful sites about children and adults going through topical steroid withdrawal (TSW).  This list is still under construction, so if you know of a blog/video on TSW/TSA, please contact Ahfaye on her blog or ahfaye@gmail.com

http://byebyesteroids.blogspot.co.nz/p/tsw-warriors.html

Share the list with your doctors and dermatologists. Maybe one or two will be inspired to do research on TSW in children and TSW in adults. If they do, please tell them to contact me. I’m looking for a researcher/physician to assist in research on TSW in children.

Happy first day of Spring!

“With God we will gain the victory, and he will trample down our enemies.”  Psalm 60:12