Is It Eczema or Something Else?

Brian’s eczema just didn’t look like eczema anymore. By 10/05/13, his symptoms were glaring:

1) Worsening itching of scalp, face, neck, shoulders, chest, anterior and posterior elbows, wrist/hands, anterior/posterior knees, shins, feet/ankles (not just original site of eczema);

2) Numerous cuts on face/neck, other body parts from scratching;

3) Severely flaking skin and thinning of skin especially of his elbows and knees;

4) Non-healing cuts, dotted rash;

5) Rashes and redness remained even with proper steroid application;

6) Itch/rashes were now full-body rather than just on face, elbows, and knees

as with original diagnosis;

7) Unable to get sound night’s sleep due to constant nightly scratching despite medication (he would finally fall asleep around 6am, only to have to be up by 830am to go to school!)

8) Unable to focus, concentrate;

9) Fatigue evidenced by decline in physical performance on and off baseball field, and

10) No amount of high or low potent steroids relieved the redness, rash, or itch.

No internet  pictures of eczema looked like this. Then I came across Juliana’s face, blog, and ITSAN (International Topical Steroid Addiction* Network.)  I read her blog  and looked at her before and after pictures, and I was ecstatic and filled with hope.

Her before pictures mirrored Brian’s symptoms, though much worse, and her current healed state is incredible. She started with eczema and finished with Topical Steroid Addiction/Withdrawal. She started “the cure” in 2011, and is almost completely healed in 2014. ITSAN.org is a forum of fellow “red skinners,” many of whom started using topical steroids for eczema, and also had Brian’s and Juliana’s symptoms.

No, Brian’s condition wasn’t just eczema anymore. The solution had become the problem. On 10/06/13, we started “the cure” with Brian: total cold turkey cessation of all topical steroids.  And the adventure began.

Asleep before 12AM

Last night, Brian fell asleep before 12am for the first time in months and actually slept until 2:30am before the 2:30-4am itch fest began.

He awoke with the tops of his feet itching unbearably. After an hour and a half of massage to the feet with coconut oil, acupressure, deep breathing, hot packs, ice packs, soothing music, and mama doing the scratching, he started screaming loudly, “Help me, mama! Help me!”  What was I doing, baking cookies!?!?

Sleepy and frustrated, I’d about given up so all this heartless mama could say was,  “Keep it down! Daddy’s trying to sleep!”

“Well so am I!” he shouted back.

We settled on praying, thanking God for the healing we knew was happening beyond the itch, and taking nice, deep, calming breaths.  (The breathing was more for me than him, I think.) Then sleep and peace came at 4am. PTL!

Eczema Treatment History up to 10/05/13

If you or your child is battling eczema, you may be familiar with the following regimen.  What we wouldn’t do to find relief for our son!

Eczema Diagnosis: PCP December 2004 @ 18 months old

Initial presentation: It started as a very thin, red line in right popliteal fossa (back of knee.)  Initial treatment: Westcort & Elidel; aquaphor/eucerin; Benadryl/Claritin at night. Use thin layer of Topical Steroid (TS) until flare calms down, then use Elidel 1-2x/day.

Main Topical Steroids (TS) used: Mometasone (started 6/22/05 w/ dermatologist), Triamcinolone–thin layer on affected site daily until flare calms down; dermasmoothe on scalp.

Other topical medications tried: Elidel, Protopic, Westcort, Clobetasol, Desoximetasone–thin applications on affected areas  1-2 x daily until calm, then discontinue until the next flare.

Other Medications used:  mupiricin, bactroban, Keflex/cephalexin, Zyrtec, Benadryl, Atarax

Moisturizers used: Aquaphor, petroleum jelly, (Bag Balm just recently on hands,) Cetaphil, Vanicream, Cereve, Aveeno, coconut oil, olive oil

Dermatologist: Started 6/22/2005. On 1/16/13, rx was mometasone 2x/day x 2wks, then triamcinolone: Triamcinolone, protopic, or elidel for armpits, groin, and neck; dermasmoothe on scalp; mometasone for body–come back in 2 months. Last office visit was 3/21/2013.  On 11/25/13  I tried over the phone to discuss possibility of Brian’s spreading eczema/full body redness as a reaction to the steroids, but a written statement from dermatologist, read by an RN, stated it was not possible for Brian to have what Dr. Rapaport spoke about (topical steroid addiction/withdrawal) “because the steroids used were not that strong.” The nurse said  “If he’s red all over, he needs to be on medication.”

Allergy testing:  April 9, 2009 (+) cat, milk, dust mites–avoided these allergens;

May 2, 2013(-) (Not Atopic)

Alternative medicine:  5/2013 Naturopathic blood test- sensitive to eggs and fruit-sugar combo– probiotics, fish oils, various remedies. Still taking fish oils (Nordic Naturals) and using UNDA homeopathic preparation for itch. Kept extensive food/activity log. Will follow up with ND again once genetic testing results arrive.

Various Measures for Itch Relief before stopping TS :

Topical and oral medication; ice packs; ice cube massage; cold wet wash cloths; 2 trials of TENs; distraction (x-box, movies, BB shooting, bows/arrows, playing outside, etc.) and anything to occupy hands; deep breathing/visualization; bleach baths—1/8 cup bleach to ¾ tub of water; oatmeal baths; apple cider vinegar; UNDA cream (homeopathic preparation containing horsetail and St. John’s Wort)

Eczema Protocol and Other Extreme Measures:

Eczema prevention checklist/protocol from the National Eczema Association (NEA)

  • Moisturize every day.
  • Wear cotton or soft fabrics. Avoid rough, scratchy fibers and tight clothing.
  • Take lukewarm baths and showers, using mild soap or non-soap cleanser
  • Gently pat your skin dry with a soft towel – do not rub.
  • Apply a moisturizer within 3 minutes after bathing to “lock in” moisture.
  • When possible, avoid rapid changes of temperature and activities that make you sweat.
  • Learn your eczema triggers and avoid them.
  • Use a humidifier in dry or cold weather.
  • Keep your fingernails short to help keep scratching from breaking the skin.
  • Some people with allergies find it helps to remove carpets from their house, and give pets dander treatments.

1) “Space suit” within 3 minutes of bathing (Aquaphor or petroleum jelly)

2) All dye-free, perfume-free, hypoallergenic, dermatologist-recommended products  (No good-smelling stuff for us!)

3)   Under Armor shirts (recommended by dermatologist) to keep skin cool and wick away sweat

4)   Whole-house duct cleaning and air purifier

5)   B-dry moisture proofing and healthy home air purification and humidity control

6)   No pets, minimal carpeting

7)   Humidifier

8)  Followed standard eczema protocol

9)   Dust mite covers on all pillows, mattresses, and box spings

10) Use “Allergenie” setting on washer for bedding

11)  Diet variations and eliminations

Brian’s skin got better for a little while, then it flared again. Over the years, the flareups lasted longer than the calm periods. He has had to take antibiotics about 3 x/year because of skin infections from the scratching. When he was in first grade, he was so dry, red, and itchy that he needed moisturizing 3x/day. He applied the second coating in the clinic during school and toughed out the questions and the stares as he walked his red, aquaphor-coated body back to class. My heart broke for him, and we desperately searched the internet for more effective treatments, relief for his misery, and answers as to why his eczema grew from a little red itch to a huge painful problem.

Thank God for the internet!

Welcome!

And it all started with a little red itch. . . .

This blog will chronicle my 10 year old son’s (our) experience with eczema and his rocky road to recovery through Topical Steroid Withdrawal (TSW.)  I appreciate your patience as I add our story.

In the meantime, visit ITSAN for more personal stories, pictures, and support related to TSW and Red Skin Syndrome. Thank you so much for visiting, and please check back!