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

 

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

Easter, Baseball, and TSW

It’s been a nice Easter break from school. Little break from the pesky itch, but at least energy and function are good.

This year, we were able to go out of town with friends, go to Busch Gardens without cold packs, and Brian was able to get up today by 6am to make it to an 8am game–and play in it. No fuss, no muss.

This time last year, at the same tournament, the attempt at 6 am wake up was a disaster, and he made it to the later game, really wanting to play. However, the mind was willing but the flesh was weak and painful and itchy (3/5 to 4/5 scratch scale)  From Log:

Day 182-184     4/5 – 4/7/14    
All 3 nights he got 3 or 4 hrs straight sound sleep, then rest was scratchy sleep from 12 to 6am.

Tried to get up at 6am and 7 am respectively on Sat and Sun. for baseball tournament. Able to do it with effort, but scratched 3/5 to 4/5 during day and had major itchfest meltdown around 2:45 pm on 4/5/14. Outside most of day. Got to play very little due to coach feeling like itch getting in the way of ability to play (though moving around probably would have been better for him than sitting.) Had to go home to rest, ice down. Couldn’t get up as early 4/6. On 4/7–very tired; scratch hard 6am, asleep til 9 am and then til 12pm. Not yet ready for regular early morning wakeups due to incapacitating mid afternoon itchfests that result from inadequate amount of sound sleep.

What a difference a year makes! Today, we were at the ballfields from 7:30 am to about 5:30 pm, and his team, VA Breeze Elite, won 3/3 games. Brian was able to play in all three with just 0/5 to 1+/5 scratching and no ice packs, except for his finger which he banged up diving back to 2nd base. His batting and defense are coming back, too. It was a great day with his friends.

What a difference 18 months off topical steroids make!

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Brian playing 2nd base 4/11/15–18 months TSW

 

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Batter up!

 

 “This is the day the LORD has made. Let us rejoice and be glad in it!”

Psalm 118:24

To Stop or Not to Stop Topical Steroids for Eczema?

CAUTION: If you have been using topical steroids for eczema, STOPPING topical corticosteroids (TS) completely is NOT to be taken lightly. Find a supportive doctor. If addicted to TS, your body will go into Topical Steroid Withdrawal (TSW), and the doctor can help you treat or manage all the symptoms that come with it.

* TSW symptoms: whole-body redness, burning, stinging, pain, increased itching, red sleeves, swelling, oozing, flaking and shedding copious amounts of skin, hair loss (head and body,) insomnia, temperature dysregulation, fatigue, thoughts of suicide, possible HPA axis suppression and stunted growth in children, and others

* Symptoms often last 24 hours/day and 7 days/week for months to years, with the skin cycling constantly. The pain and itch can be unbearable.

*Function can be severely impaired. Many adults have to stop work or limit work hours. Students often miss school.

* TSW impacts the entire family.

* TSW is NOT easy; not everyone will be able to follow through to the end.

* Some people may go through TSW for several weeks, months, or years and have to return to using topical steroids because the suffering was too unbearable and quality of life deteriorated. There is no shame in this. THAT is just how difficult going though TSW is.

* Having a doctor or other healthcare practitioner who will work with you (whether they believe in TSA/TSW or not) is important so they can monitor your health and help you through any crisis you may experience with TSW, like skin infections and pain management.

*Do your research.

*Make an informed decision. Be prepared for everything that TSW involves. The choice to use TS is yours; the choice to stop TS is yours. Make the decision that is best for you and your health.

*Full recovery from TSW does not necessarily mean “cure” of the original skin condition (for example, eczema.) The underlying eczema may reemerge, but it is nothing compared to the hell on earth that is TSW.

*NOTE: One should never quit systemic or oral corticosteroids cold turkey. These medications must be tapered with a doctor’s assistance.  It is only the topical corticosteroids we are discussing here.

FOR PARENTS: research the medications; read the TS’s patient instruction pamphlets. There are few, if any, long-term studies on the use of topical steroids on young children, and many TS do not recommend they be used on children under the age of 2. You must weight the risk/benefit, follow the drug’s precaution instructions, follow your gut.

For us, taking Brian off TS was logical because the TS stopped working to manage his eczema, and he was only getting worse. Why continue using something that no longer works? Then we found ITSAN and other helpful blogs. Stopping TS was the right thing for Brian, and although he is still going through the later stages of TSW, his function, itch, and skin are far better now than when he was on TS.

I do not regret putting Brian and our family through the hell on earth that is TSW. I do wish I had been more diligent about trying various natural or alternative methods of eczema treatment before using TS.

To stop or not to stop topical steroids? Pray for guidance. You must do what is right for you and your situation, and be at peace with your decision.

Wishing you all the best…..

“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

A Year Ago on This Date…

“I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

We stopped using topical steroids for Brian’s eczema on October 6, 2013, and he began the long, painful, itchy, miserable journey through topical steroid withdrawal (TSW.)

Fourteen+ months later, here is today’s entry from my Log:

DAY 442/443 Sunday 12/21/14 and Monday 12/22/14

Rainy, 34 degrees. Played with good friend Brett. 0/5 ss to 2/5 ss. Movies, milk, popcorn, xbox. On these dates last year, Brian was playing with Brett, it was in the 70’s, rainy, and Brian was 4/4 ss, constant scratching throughout the day, and took atarax at night–which didn’t work for him. What a difference a year makes!

Good friends are forever, but TSW is not! 

Praise the LORD!

CLICK on picture to enlarge. Dates are on far left.

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Please Keep a New Generation of Children from Developing Topical Steroid Addiction and Withdrawal

By donating $1, $5, $10–whatever you feel led to give– to ITSAN.org, we can help ITSAN continue to spread the word about Topical Steroid Addiction and Withdrawal (TSA and TSW) and about the dangers of topical steroids.

ITSAN has helped us as my 11-year-old has gone through TSW. Had I known 9 years ago what I know now, I would never have used topical steroids for his eczema. I would have been more insistent on non-steroidal alternatives and more diligent about using natural remedies that ARE out there.

Not everyone will develop this reaction to topical steroids, but for those who do, it is a long, miserable, itchy, smelly, exhausting, painful road you will wish you had never taken.

In my opinion, the CURE for TSA/TSW is PREVENTION: NOT USING topical steroids in the first place.

PLEASE help ITSAN spread the truth about topical steroids so that parents can make a truly informed decision as to whether or not to use them and risk their child going through this hell that is TSW.

Thank you so much for any amount you can give!    ITSAN.org

Wishing you peace, comfort, and endurance as you battle this beast. You WILL win!!!
Rosemarie