Picture Progress November 2013 through March 2014

In October 2013, we officially stopped using topical steroids (TS) to treat Brian’s eczema because he was not getting better, and the side effects of long term steroid use were not acceptable. These are pictures documenting Brian’s progress from 11/2013 to 3/3/2014. All of the pictures were taken after he had bathed and moisturized. Pre-shower pictures during the initial bad flareup after stopping topical steroids are not available because his skin condition prior to bathing was so bad that he refused to be photographed. I couldn’t blame him.

His healing process has been a series of long flares (weeks to months) with a few calm days. His skin is regaining its normal thickness as is evident in pictures showing fewer cuts on neck, elbows, and knees, despite constant scratching. However, a red flareup can unexpectedly rear its ugly head within a matter of minutes of a calm episode.

CLICK ON THE PICTURE TO ENLARGE











Homebound

Our school system has homebound instruction wherein a student gets 1 hour of instruction for each day he misses, as long as it is medically necessary. Brian’s pediatrician submitted a medical referral in December to request homebound.  To support his need to stay home, I submitted the information below to his doctor last week. See FAQs for symptom TSW list.

Improvements Since Staying Home, Being on Homebound Instruction since 12/2/2013:

1) Able to get more sound night’s sleep (3 AM –12 PM or 1PM)

2) Wounds/oozing well-managed, minimizing infection risk

3) Improvement in energy level, better able to participate in activities

4) Able to catch up with schoolwork

5) Able to scratch and shed flaking skin in the privacy of his own home, which is socially, emotionally, and psychologically beneficial to him

6) Temperature regulation back to normal (able to play in snow in shorts again) no longer complaining of being “so cold”

The First 5 Months and Day 147

Since Brian’s diagnosis of eczema in Dec. 2004, I have kept a log/journal of some kind or other to try to find patterns in foods, activities, humidity, weather–anything that would help us find the root cause so we can fix it. During bad times, the entries were daily and detailed; during good times, just an entry of thanksgiving until the next flare up.

The medical philosophy was: use the steroid ointment to calm the flare, then switch to a non-steroid medicine like protopic or elidel for maintenance. This is reasonable, but I believe in using the least amount of anything to do the most good, so when the flare calmed down, we stopped applying any (non-natural) medication. Maintenance then consisted of continuing the basic eczema protocol and getting an oral antibiotic when the wounds wouldn’t heal due to a skin infection. Elidil and protopic  did not seem to make much difference in the itching, redness, or skin quality, so we used Elidel minimally and protopic hardly at all. Mometasone was our go-to steroid, as it always seemed to get the red out, but we avoided using it on the sensitive areas like the face, neck, armpits, and groin. As his redness and itching spread to other body parts, we really did not want to slather mometasone all over his body.

As the years went by, the flares became more frequent, and no patterns really stood out except one: the topical steroids became stronger, we started used them 1-2 times daily (thin applications only on bad parts), and Brian’s eczema got worse. But it took ITSAN to help us acknowledge this. On October 6, 2013, we stopped using all topical steroids on Brian.

Since the fall, I have journaled in excel and taken pictures at various times in his withdrawal, so I could try to find patterns. When a flareup hits and I’m doubting our course of action, I can look at the past pictures and notes and see how far he has come and the improvements he’s made. This blog has become my new journal. I’ve always been a little behind with technology, just didn’t want any part of it. I prefer “Little House on the Prairie” days or caveman times. Heck, if it weren’t for my husband, I’d still be using a dial-up telephone and looking for typewriter ribbon. So here we are, and I hope this blog can help at least a few people avoid the long, painful process of topical steroid withdrawal.

After October 6, life and itch continued as usual. Brian was tolerating school until November 16, 2013, when the being cold and stinging/burning volcano phase started. He missed 3 days of school. He was back at school for one day, then the oozing and flaking started (on top of the itching and burning) the day before Thanksgiving and lasted about 6 weeks. I took him out of school December 2nd because of the wound care he needed, the oozing, lack of sleep, burning, stinging, flaking, and itching. I figured I could let him sleep in as long as he could in the morning, and start “school” after he was ready for the day.

During the first few weeks of “homeschool,” Brian was so tired from lack of sleep and so sick from the withdrawal symptoms that he could barely get through a few assignments at a time. The morning sleep allowed his body to rest and heal during the day, since he was up scratching, tossing, and turning at night. It took almost 2 hours to get ready for the day because all movement was slow and painful, and I often had to help lift him to his feet. He improved over Christmas Break, and official Homebound Instruction began in January 2014.

Today is Day 147 off TS, but the itching is relentless. I try to remind him (and myself) that it is a sign of healing like they say on the forum. The shedding continues, though sometimes it is only 1/4 cup of dead skin crumbs instead of a cup. The increased night time scratching/inability to sleep and the need to sleep into the day continue. BUT there are improvements.

1) He is not constantly red head to toe all the time;

2) Temperature dysregulation is gone for now: he can run around in shorts in the snow again and not be cold;

3) The skin on his back can be as smooth as a baby’s butt 75% of the time and switch to pebble grain texture at other times;

4) Skin on his knees and elbows is thicker, and knees are not scratched up, scarred, and hypo-pigmented;

5) His skin seems to be not as thin because even though he scratches hard and furiously, he is not scratched up like he used to be;

6) Most of the time his overall energy level is better, and we are working on getting his strength and endurance back.

We still have the crying and screaming in pain and itch and long sleepless nights where I rub or scratch his back and feet as he does his best to keep it together, but he is healing and, by the grace of God, we will get through this.

“Trust in the Lord and do good.” Psalm 37:3

Symptoms After Stopping Topical Steroids

Symptoms after officially topping all Topical Steroids (TS) on 10/06/2013 included:

1) Redness (full body except white palms & triangle over nose)
2) Itching (full body) even when skin is clear; worse at night
3) Stinging/burning
4) Oozing, crusting
5) Edema, cracking skin of face/ears
6) Shedding/flaking (full face and body) of skin
7) Temperature dys-regulation (Became cold all the time, when he used to be able to be out in the snow with shorts)
8) Loss of hair on legs, thinning of eyebrows and head hair
9) Insomnia/change in sleep-wake clock
10) Elephant skin
11) Fatigue (physical, mental, emotional); Emotionally labile

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.

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!