How to see progress at 21 months TSW when healing seems stalled

If you are just starting TSW or thinking about starting TSW, please read this and this  carefully. Also, you may want to refer back to the March 2014 Log entries and posts for pictures and information that may more closely reflect your current position in this TSW journey.

For those nearing the 18 month or 2 year mark, you may understand what I’m sharing. Brian started this journey as a 10 year old, and he is now 12. We are going on Brian’s 21st month free of topical steroids (TS), and he is 125% physically and functionally back to normal, no longer needs benadryl/zyrtec, can pretty much sleep through the night, and has not had an infection requiring antibiotics in nearly 2 years. However, the recovery from TSW, in terms of “come and go” full-body skin signs and symptoms if itch, rash, and shedding continues. This makes me feel like last year was better.

I remember June-August 2014 (months 8-10 TSW) being a huge breakthrough: clear-skin, itch-free, shed-free, and sound sleep for Brian–especially the month of July. A three-month span of incredible normalcy which we had never experienced since he was 17-months-old. And now, July 2015, though the shedding finally slowed again, he continues to scratch periodically during the day and some at night, occasionally waking–not too long– because of the itch, and his skin is marked with scattered scratches and sporadic erythema or rashy areas. Then the next morning, it doesn’t look as bad as it looked the night before, and I think, “His skin and itch were so much better last year!”

SO, I go back to read my blog and log entries for this time last year and compare them to now, and this is what I found regarding skin and itch:

MONTH/YEAR             SCRATCH SCALE (grossly throughout the day)
July 2014                     Generally 2/5 to 3/5 then <2/5 towards end of July 2014

July 2015                      Generally 1/5 to 2/5 and more days with episodes of 0/5 to 1/5
                                      lasting 1-4 hours at a time. Occasionally a 3/5 episode at night.

Lesson for me: my memory sucks and I shouldn’t rely on it! Thank goodness I made a scratch scale, took pictures, and wrote down descriptions of Brian’s signs and symptoms, documenting his treatments and progress. Otherwise, today I would have nothing but distorted memories with which to compare his current condition, and I’d feel like minimal progress has been made. Overall, the itch and scratching episodes have decreased in intensity, frequency, and duration. This year is better than last year.

Lesson for you: Document. Take and date pictures. Use objective measures so when you feel like nothing’s happening, you can look back at your data and see just how far you’ve come.

Get a supportive doctor. Stave off infection. Treat the symptoms. Scratch sensibly. Be patient. Give thanks. Keep the faith. Beyond the itch, healing does happen!

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

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July 13, 2015   DAY 647  Pictures after return from SD. Used QD light moisturizing with coconut oil on torso/face and Stephanie The Home Apothecary’s Breezy Balm on extremities.

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The pictures above are after recovering from a several-months-long flare involving return of lower extremity red sleeves, night scratch-waking, and teaspoons of shedding.

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Less than 1/16 teaspoon shedding. Compared to 1/2 and 1 tsp measuring spoons.

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

Here we go again….

Praise be to the LORD, to God our Savior, who daily bears our burdens.” Psalm 68:19 
  

“Scratch my back…..”

Going through some rough itchy days and nights right now. Brian’s back to waking up at 3am, sleep-scratching vigorously until 4am, then sleeping hard until I have to “shake him awake” at 7:15am to get ready for school.

As I help him scratch in the wee morning hours so he can try to sleep, I have to reassure myself with the theory that “itching=healing.” We’re just helping to slough off the old skin to uncover the good skin underneath. Like Juliana says, who doesn’t feel that sick satisfaction of peeling off a nice big flake of dead skin? And repeating this about a thousand times….

Okay, if you’re not going through TSW or not a parent of a child going through TSW, it does sound gross. So, try this: spread Elmer’s glue on the tip of your finger or the tip of your kid’s finger. Let it dry. Then try peeling it off, trying to keep the whole thing intact. Cool, huh? Well maybe not so much for you, but with TSW, one has to find pleasure in the simplest things.

Hopefully, Brian’s sleep disruptions will not impact his daily function like it did last November. I could handle homeschooling a 5th grader, but I don’t know if I could survive the attitude and moodiness that would result from homeschooling a 6th grader/preteen. Brian wouldn’t like this change in me, either. 🙂

“Praise the LORD, O my soul, and forget not all his benefits–who forgives all your sins and heals all your diseases.” Psalm 103:2-3

Don’t Let TSW Keep You Down!

Brian is still in the “little” flare (increased at-rest itching, some shedding) that began at the end of July/beginning of August, but he’s not letting it keep him down.

This little 6th grader ran in his first cross country meet on Wednesday 9/25/14!  Actually, it was his very first real race EVER. After 2.2 miles running/racing alongside a good friend, Brian expressed a little disappointment in his finishing time. I had to remind him that he didn’t do too badly, considering he had just started running (for sport) 2 months ago–voluntarily, at that. He just shrugged it off, mumbled something to the effect of, “That’s no excuse,” and ran off to goof off with his teammates.

Heck, I’m just so thankful he can run at all—and sweat without having an incapacitating itchfest– and laugh and play and be a moody 6th grader who can attend school and learn and have fun….and did I mention be a moody 6th grader?

No matter what stage of  Topical Steroid Withdrawal  (TSW) you are in, hang in there. TSW takes a long time, but it doesn’t last forever. You CAN get through this!

Keep the FAITH.
Stay STRONG.
Be PATIENT.
PERSEVERE.

Go the distance, and you will not be disappointed.

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

“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 will rest secure.”  Psalm 16:8-9

11-Month Flare But Still Back in Action

On the ITSAN forum, veterans of Topical Steroid Withdrawal or Red Skin Syndrome speak of the “11-month flare.”  Well, Brian’s skin has been flaring slightly  since the end of July, early August. The flare for him started as a slight increase in itching, and now it has grown to include more red, raised rashy areas on his neck and trunk, along with increased flaking of the neck area and more itching  (ss 3/5) during inactive times. Thankfully, the itching is still not as continuous and intensely incapacitating as it was several months ago.

Despite this seeming setback, Brian continues to improve in strength, endurance, and function. He is attending school full time, being able to get up by 7am and catch the bus to school. He has also taken up cross country running, continues with travel baseball, and plans to do basketball in the winter.

After coming in second in last weekend’s tournament, Brian’s team won the “Back 2 School Bash” this weekend. They are off to a good start of Fall baseball. Beyond the skin and itch, Brian is having a good Fall start, too.

Virginia Breeze Elite 11U Division 1

Virginia Breeze Elite 11u Division 1 “Back 2 School Bash” Tournament Champions September 13-14, 2014                                (Brian is the last one on the right in the front row.)

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Boys will be boys….

Hello Richmond; Good Bye Topical Steroid Withdrawal!

After sleeping on the floor for the past several months, one of the perils of being able to sleep in one’s own (twin) bed again is falling out of bed–which is exactly what Brian just did as I sat down to write this post. Did you hear the thud?

After a moment’s hesitation as to whether I should keep typing or check on him, I did go upstairs to see if he was okay; and he was. However, I could have just kept on typing because he didn’t miss a wink and could easily have remained asleep there on the floor. I put him back in bed, and he continued snoozing peacefully.  I just hope he doesn’t have a concussion or broken bones in the morning….

Well, we are now back home after a great vacation to Denver and to South Dakota for a family reunion (my in-laws are the BEST,) and I finally updated the daily Log to include the nearly 2 weeks we were gone. If you like to read daily updates, feel free to check out the Log.  It’s kind of like watching grass grow, but sometimes the difference is in the details.  If you just want to see the big picture, the posts are for you.

How do we know that the Topical Steroid Withdrawal is on its way out?

1) MORE SLEEP: Brian can now get 6-9 hours of sound sleep in his own bed without needing ice or a parent to help relieve the itch.

2) BODY CLOCK is getting back to normal: He can go to sleep around 10 or 11pm and be awoken at 8am without an itchfest meltdown later in the day. The time difference while on vacation kind of messed us up a little, but no worries. He’ll get back into the groove.

3) ITCHING HAS DECREASED in frequency and intensity: Itching now ranges from 0/5 t0 2/5, with 3/5 being a “flare” or “increased itching,” compared to the 3/5 to 5+/5 a few weeks ago (See Scratch Scale found in the beginning of the Log.)

4) INCREASED STAMINA AND ENERGY: Brian is able to be active and on the go–often 12-14 hours– from the time he wakes up until the time he goes to bed.

5) POOL: He can swim and play in the pool again. Today, we had a pool party with his Rec baseball team, and he swam and played from 4-8pm, stopping only during adult swim or to eat. This was right after a 1-3:30pm baseball practice with his travel team.

6) SWEAT DOESN’T STING ANYMORE! WE CAN LEAVE THE ICE PACKS HOME!!! Brian did not have any itchfests while on vacation in 90+ degree weather and did not need ice cubes or ice packs to relieve the itching he did have. These past 2 days, he practiced baseball and played in very hot, humid weather while the ice packs stayed at home in the freezer. He did not need them. 

This is HUGE! The feeling is like not having to carry around a diaper bag and stroller anymore. 🙂

So, is his (our) ordeal finally over? Not 100% yet, but we are still happily saying, “Goodbye, TSW! Don’t let the door hit you on your way out!”

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Here are some pictures from vacation and the reunion in South Dakota.

Click on the picture to enlarge. 

IMG_1005A view from the side porch of Moreau River Sanctuary, where we had the reunion. It was absolutely breathtaking, and this picture does not do it justice.

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Brian and his cousins playing corn hole in the back yard at Moreau River Sanctuary.

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IMG_1015Baseball, Petersen/Peterson style–Brian’s getting ready to bat

IMG_1025Late night game of “Left, Right, Center” with the cousins.

IMG_1028Fourth of July parade in Hot Springs, SD. Can you see Brian under the flag, reaching for more candy to toss to the spectators?

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Driving to Breckinridge, CO

  “Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you.”  1 Thessalonians 5:16-18  (KJV) 

9 months free of topical steroids!

A belated Happy 4th of July! We’ve been on the go since the last post and have not yet slowed down enough for me to update the blog.

Friday, July 4, 2014 was Brian’s 272nd day off topical steroids! It was a great “Independence from Topical Steroids” Day.

Itching (1/5 to 3/5 on Log scratch scale), mild shedding, dry skin, and some eczematous patches are still hanging around but have not interfered with almost non-stop activity in often hot conditions. He’s not been using moisturizers much, if at all, since at least 6/28, so it will be interesting to see if his skin gets the same positive results as other Topical Steroid Withdrawal (TSW) folks who have done moisturizer withdrawal (MW). So far, I have not seen a significant decrease in scratching or shedding and his natural skin oils have yet to emerge, but it’s still early in the MW process.

I’ve been having trouble with my pictures but will hopefully have some photo updates soon.

Besides the obligatory scratching and shedding, my bigger little boy is living and loving life. Keep the faith, and hang in there! You will be, too!

“Oh, taste and see that the LORD is good; Blessed is the man who trusts in Him!”
PSALM 34 : 8 (NKJV)