How Quickly They Forget or Choose to Forget the Hard Times

One of things I worry most about with Tristan’s eczema is, will he look back on his toddler years (when his eczema was the worst) with fear in his eyes?

  • Will he remember the countless nights he spent writhing in itchy agony in his bed as my husband and I took turns holding him and trying to calm his irritated skin and restless mind?
  • Will he remember his hysterical pleas to skip just one bath or how it felt when the cool bath water burned his broken skin as he screamed and lashed out?
  • Will he remember my husband and I holding him down as we slathered on cream multiple times a day, every day, each time the stinging and his tears were relentless?
  • Will he remember seeing mommy cry all those times?

At 4.5 years old, I’m very relieved to say that Tristan doesn’t remember how itchy he used to be or how severe his head-to-toe eczema actually was.

Happy Eczema Free Days

A happy Tristan and a tear-less mom enjoying these eczema managed days.

Just a few months after he turned 3 we FINALLY got a handle on his eczema. (You can read about our family’s battle with eczema here. Or you can view our various Eczema Trials for all the details.) That was just a little over one year ago.  He has memories from around that time, just nothing to do with his eczema. For that I am grateful. I’m guessing this is an example of selective memory at it’s finest.

If you’re dealing with the emotional and physical stresses of eczema today, hang in there. Things will improve. Just stick with your intuition and be an advocate for your child, like this mom.

If all this talk about the challenges of dealing with severe eczema has got you down, take a minute to enjoy a laugh at our eczema spoof “Stuff Eczema Mamas Say.” I’m sure you can relate….and please try to look past my horrible acting skills.

Asthma, Eczema, and Attitude (Guest Post)

I was so charmed by the incredibly cute Asthma Peeps stickers for asthma inhalers and spacers that I asked Kym, the lovely and brilliant momma behind their creation, to share how she managed her daughter’s eczema.
Kym Latter

Bio: Kym Latter is an Australian mum and founder of Asthma Peeps.  Her asthma journey is about educating herself as much as she can about childhood asthma so that she can help her daughter, and other children like her, accept their condition in an open and positive way. You can find out more at the Asthma Peeps website, blog, or Facebook page.

Asthma, Eczema, and Attitude

When my daughter was just a baby she began to suffer from eczema. We knew it was only a matter of time before she developed asthma. They do seem to go hand in hand and we were somewhat prepared as we have a family history of both.

My daughter’s experience has shaped and changed our family life, and has also changed me. I’ve become an advocate for parents who have children with asthma and I thought I’d share a few tricks that have helped our family manage the pairing of skin and lung sensitivities.

Dear diary
We keep an asthma diary, or more accurately a ‘triggers diary’. In it we note down the date of any flare-ups, the time of day, what we were doing, the weather, what she ate that day, who (or what) else was around. Over time this gave us a really clear understanding of situations and environments that brought on asthma or eczema.

Avoiding triggers
They are the same triggers for asthma and eczema! Scented soaps and dust mites are nasty for broken, sensitive skin and can also flare up asthma prone lungs. We have the gentlest of skin cleaning products (and the fiercest vacuuming schedules).

Watching the seasons
Temperature, weather and clothing take on new importance for parents of children with asthma and eczema. Through our triggers diary, we noticed sweaty, active days were the worst for her skin, so our daughter prefers cool cotton clothes through summer. To the other extreme, windy, cold seasons also meant extra moisturizing balm for her exposed hands.

Her asthma is definitely worse in winter, that sharp air and the added issue of colds and runny noses. Winter has become the time for our regular check-in visit to the doctor where we review our daughter’s Asthma Action Plan.

Have some fun
Our daughter knows how to have fun, and she reminds us daily that even the most serious of topics can be approached with a smile. We try to keep all her health precautions, medications and considerations a light-hearted part of our day. We protect her as much as we can, and ensure she feels in control, not controlled by our best intentions. Just because we are her parents, we try to find a balance between seriousness and play.

Thank you Kym! Asthma Peeps just launched an adorable child’s book about asthma called, The Trouble With Bear Hugs. Take a look at the gorgeous illustrations. It’s available for sale on the Asthma Peeps website.

trouble with bear hugs book

Our Eczema Trials: Dry Wrapping

With severe eczema, nothing can provide immediate relief like wet wrapping. See the step-by-step instructions on how to wet wrap in my post here. Wet wrapping isn’t a long-term solution and isn’t necessary for mild to moderate eczema, but dry wrapping is!

Dry wrapping is VERY easy to do and you may have tried it without even knowing there was a term for it.

What is Dry Wrapping?

It’s simply heavily moisturizing the skin and covering it with a dry layer, such as mittens or gloves for hands, for an extended period of time.

Why does it work?

The dry layer helps hold the moisture next to the skin and is more effective than just applying moisturizer to the skin alone. Wet wrapping is even more effective as the wet layer will maintain the moisture for extended periods of time.

What are dry wraps?

WrapESoothe wet wrapping and dry wrapping suit

AD Rescuewear suits, great for wet wrapping or dry wrapping for eczema relief.

Dry wraps are clothes or bandages used to wrap and protect eczema skin. You can use clothing made specifically for dry or wet wrapping, but items you already have at home can work too (pajamas, tube socks for hands and feet, etc). Clothing should be form-fitting and made of natural fibers like cotton or bamboo.

What do you need to get started?

  • Cream or balm/salve (National Jewish does not recommend Aquaphor)
  • (1) Set of clothing or bandages/dressings. Exact garments will depend on areas you want to treat, but can include:
    • (1) one-piece pajamas or top & bottom, form-fitting
    • (1) turtleneck for wrapping the neck, or scarf
    • (2) pairs of long white cotton tube socks to cover hands and feet
    • (1) sets of gauze bandages for wrapping the face and head

How to dry wrap step-by-step

You can dry wrap your entire body, but if the eczema is that extreme you may want to consider wet wrapping instead. Usually dry wrapping is done on specific parts of the body with chronic eczema or an irritating flare up. I like to lather my hands up with cream and slip on a pair of white cotton socks before I go to bed as it really helps the mild eczema I get between my fingers and on the backs of my hands.

  1. Moisturize the skin with a cream or balm/salve of your choice, making sure to liberally apply on the areas of the body that need treating. The skin should be very moist when finished. You may need to go back and apply another layer in some areas before moving to the next step.
  2. Cover the areas to treat with a dry layer of clothing or bandages.
  3. Leave the dry layer on for a minimum of two hours, overnight is great.
  4. If you’re able, remove the dry layer every few hours, re-moisturize, and cover with the dry layer again.

Tips for dry wrapping and your eczema child

  • Try wet wrapping at night for minimal objection from your child. An added bonus, keep the hands covered to prevent night-time scratching.
  • Virgin coconut oil and raw shea butter work great for dry wrapping. We also love Manuka Honey Skin Cream.
  • Use caution with long wrapping bandages that could become unwrapped, potentially creating a suffocation hazard. This would be of particular concern if the child wears the wraps to sleep.
  • Children’s eczema clothing is made specifically for those with sensitive skin and is great for dry wrapping.

Have you tried dry wrapping? Did it work well for you?

The Eczema App, a New Personalized Resource for People Living with Eczema

Today I came a cross a brand new app created just for eczema. How cool! And how over due.

the eczema app

The Eczema App enables patients to record and track their flare-ups over time, store photos of affected areas, and keep notes on their flare-ups and treatment. Patients and parents can then use this information to have more informed discussions with their doctor or their children’s doctor. Additionally, the app provides news from the National Eczema Association and access to comprehensive information about the condition, which is categorized by age, including infant (3 months-2 years); toddler (2-4 years); kid (4-12 years); teen (13-18 years) and adult (>18 years).

The app can be downloaded for free at www.theeczemaapp.com.

This app is sponsored by Bayer HealthCare, so expect a good deal of medical advertisements, but other than that I’d say this is one very promising app for all of us affected by eczema.

12/13/12 Update:
I’m going to start a list of eczema apps, because apparently there are others out there. Please comment below if you know of any other apps to add to this list. Thanks!

Quilted: A Poem About Living With Atopic Dermatitis

I found this poem at The Online Journal of Community and Person-Centered Dermatology and wanted to share it with you. It so accurately describes our lives, as parents, helping our children cope with atopic dermatitis and severe eczema. If you are an adult suffering from AD or eczema, you surely can relate as well. This poem will show you how hard your parents fought for you, how they tried everything, how they wouldn’t give up on you and a better quality of life, and how much they love and adore you.

Quilted

by Luu, Clara

Clara Luu’s poem is the most eloquent description of  severe atopic dermatitis ( often called S.A.D.)  that I have come across in a long dermatological career.  If you read it, you don’t need all the textbooks or review articles.  It speaks to what we are trying to do with the OJCPCD.

Persistent scratches ripping through the tranquility of the night,
and bedsheets dusty with flaked skin,
mingled with dried blood in the mornings.
Her skin stained with the purple sting of potassium permanganate,
burning from the relentless scorch of tea tree oil, smothered in topical corticosteroids.
Bandaged to retain moisture. Unbandaged to promote air flow.

A blur of diagnoses and “diagnoses” paraded by,
convictions by professionals and well-meaning relatives:
“No heat, no chlorine, no sunshine, no pollen. No butter, no wheat, no potato chips, no fat, no chocolate, no seafood, no meat, no sugar, no salt!”
Too much American food.  oxidized oils, pesticides, hormones-those damn Oreos, all to blame.
“This doesn’t appear to be a food allergy, but we can run some tests…”
“You see, the American doctors don’t study this. This is a question of inner body balance…”
A question of hotness and coldness of the body, toxicity, mystery, cortisone creams.
And a vicious cycle of irritation, scratching,
broken skin, infection, itchiness,
crying, scolding, shouting, scratching…

And the mingling of voices of authority spilled over the reddened cracks in her skin
and filled her heart with guilt and inadequacy.
“You are the only one who knows your body. Only you can know what to do for yourself-”
And the bitterness of her condition was accentuated with the bitterness of soups and broths and reductions,
darkly resplendent with Chinese medicinal herbs, kernels, stalks, and shoots.

Later, with disappointment and failures came desperation
Cycling through past attempts, various diets.  The doctors’ echoes weren’t very much help-
the relief provided through the prescribed creams and ointments was ephemeral.
Though some knowledge provided comfort – like the dreaded skin prick testing – her back gridded into a 5×7 rectangle and stabbed thirty-five times to reveal her body’s weaknesses towards watermelon, shrimp, milk, Kentucky bluegrass,
timothy hay, walnuts, chicken, turkey, sea bass, lobster, dust, mold, and cockroaches -
Her skin still burned and flared, cracked and red and dry and unforgiving, betraying her.

I’ve watched the parade of well-meaning people walking in and out of her life: smiling
pediatricians, puzzled dermatologists, vehement relatives. No one is to blame.

I’ve watched her sneak Oreos away from the pantry, stealing bites of childhood innocence;
shopping for turtlenecks; being tormented by other children
for the ragged appearance of her skin.

Watched my father drive three hours to the only Costco that stocked unscented Keri Soothing Dry Skin Formula and return home with thirty cases of three bottles each
(which by the way, also didn’t work).
And I’ve watched her grow up and out of her skin,
which still bears the scars and rough patches of struggles and treatments,
up and out of reticence, sensitivity, resentment, confusion, worthlessness.
Rising above the motley patchwork of voices to wholeness.

Author Bio:  Clara Luu was born and raised in San Jose, CA. She is currently a sophomore at Stanford University, studying Human Biology and living an exciting pre-med life. “Quilted” is drawn from a composite of household dermatological experiences from her childhood. This piece written for the “Becoming a Doctor” medical humanities seminar taught by Professor Larry Zaroff. It exemplifies the key motifs motivating Clara to pursue a career in medicine: the mutifaceted aspects of wellness, the importance of culturally sensitive medicine, the strong role of family in the healing process, and the mysteries of some medical conditions that are the catalyst for exploration, discovery, and compassion.

Surprise Sale – Day 18

To celebrate eczema awareness month in the US, The Eczema Company is offering a daily SURPRISE SALE item.  Each day a new sale item will be announced, but the sale will only be valid until 11:59pm the same day.

No more secrets! The coupon code for each daily sale item will be announced here first, but then we’ll share the love elsewhere too. After all, everyone loves a good sale. Make sure you’re subscribed to this blog, so you’re in the know as soon as a new sale is announced!

Today’s daily surprise sale is…

All of Sweet Knee’s Products! Rubbit Oil, Bun Glaze, Oatmeal Cookie Bath, Snooze Essential Oil, Hulababy Bath Bar, Bubbly Soap – it’s all on sale at 30% off! This is a big sale, don’t miss out on your Sweet Knee favorites. These organic products were hand-picked for their incredibly nurturing and natural ingredients – perfect for children and adults with eczema.

Use the following coupon code at checkout to take advantage of this one day surprise sale.

SURPRISE18SK

And remember to feel good about your purchase, $1 from every sale in October will be donated to the National Eczema Association!

Surprise Sale – Day 14

To celebrate eczema awareness month in the US, The Eczema Company is offering a daily SURPRISE SALE item.  Each day a new sale item will be announced, but the sale will only be valid until 11:59pm the same day.

No more secrets! The coupon code for each daily sale item will be announced here first, but then we’ll share the love elsewhere too. After all, everyone loves a good sale. Make sure you’re subscribed to this blog, so you’re in the know as soon as a new sale is announced!

Today’s daily surprise sale is…

Eczema Ease Products (Balm and Bath Tea) – 30% off the retail price of $7.95-$19.95. One of our most popular product lines, Eczema Ease products contain wonderfully healing herbs to relieve the eczema itch and calm irritated skin. For best results, bathe with the Eczema Ease Bath Tea and moisturize immediately afterwards with the Eczema Ease Balm, which comes in a variety of formats for ease of use.

 

Use the following coupon code at checkout to take advantage of this one day surprise sale.

SURPRISE14EE

And remember to feel good about your purchase, $1 from every sale in October will be donated to the National Eczema Association!

Surprise Sale – Day 13

To celebrate eczema awareness month in the US, The Eczema Company is offering a daily SURPRISE SALE item.  Each day a new sale item will be announced, but the sale will only be valid until 11:59pm the same day.

No more secrets! The coupon code for each daily sale item will be announced here first, but then we’ll share the love elsewhere too. After all, everyone loves a good sale. Make sure you’re subscribed to this blog, so you’re in the know as soon as a new sale is announced!

Today’s daily surprise sale is…


Unrefined Shea Butter – 40% off the retail price of $17.95. This raw shea butter was hand crafted and fairly traded in Togo. Rich, creamy shea butter is wonderful for eczema when directly applied to the skin or added to the bath to lock in moisture.

Use the following coupon code at checkout to take advantage of this one day surprise sale.

SURPRISE13SHEA

And remember to feel good about your purchase, $1 from every sale in October will be donated to the National Eczema Association!

Surprise Sale – Day 12

To celebrate eczema awareness month in the US, The Eczema Company is offering a daily SURPRISE SALE item.  Each day a new sale item will be announced, but the sale will only be valid until 11:59pm the same day.

No more secrets! The coupon code for each daily sale item will be announced here first, but then we’ll share the love elsewhere too. After all, everyone loves a good sale. Make sure you’re subscribed to this blog, so you’re in the know as soon as a new sale is announced!

Today’s daily surprise sale is…

Bamboo SocksNEW item! 50% of the retail price of $5.87. These super soft socks are made from Eco-friendly bamboo and will provide a cooling sensation to prevent little feet from overheating. Available in one size, 0-12 months.

Use the following coupon code at checkout to take advantage of this one day surprise sale.

SURPRISE12BAM

And remember to feel good about your purchase, $1 from every sale in October will be donated to the National Eczema Association!

Surprise Sale – Day 11

To celebrate eczema awareness month in the US, The Eczema Company is offering a daily SURPRISE SALE item.  Each day a new sale item will be announced, but the sale will only be valid until 11:59pm the same day.

No more secrets! The coupon code for each daily sale item will be announced here first, but then we’ll share the love elsewhere too. After all, everyone loves a good sale. Make sure you’re subscribed to this blog, so you’re in the know as soon as a new sale is announced!

Today’s daily surprise sale is…

After Sunny Aloe Spray – 80% off the retail price of $16.95. GREAT for relieving intense itching from eczema AND chicken pox! Soothing aloe helps calm the skin and provides a gentle cooling effect. Children love this stuff! Also great for relieving sunburn.

Use the following coupon code at checkout to take advantage of this one day secret sale.

SURPRISE11AFT

And remember to feel good about your purchase, $1 from every sale in October will be donated to the National Eczema Association!