Tag Archives: eczema parents

Announcing a Breakthrough in Eczema Treatment: Chicago Integrative Eczema Center

Posted by Jennifer in Eczema, Natural Living and tagged with , , , , , , , , , , , , , , , , , ,

Honestly, I am quite beside myself over the launch of this new clinic, the Chicago Integrative Eczema Center. I met the co-founder, the amazing Dr. Peter Lio, at the National Eczema Association Patient Conference last summer, and he mentioned this clinic was in the works. So, I waited patiently for the launch and now that the clinic is open for business, I just want to shout about it from the rooftops!

Just what makes this clinic so special?

It combines the best of western medicine and natural therapies to treat eczema. Can it possibly get any better than that?! I am a firm believer in holistic medicine, but I also understand that western medicine can be essential at times. So, this clinic’s approach is spot on in my opinion. Not to mention the involvement of Dr. Lio, who is a highly qualified and respected dermatologist and happens to be incredibly kind and forward thinking. I have not had the fortune of meeting his partner, Dr. Ryan Lombardo, but if he’s collaborating with Dr. Lio, he must be just as wonderful.

Without further ado, please welcome Dr. Peter Lio for a Q&A about the new Chicago Integrative Eczema Center!

Chicago Integrative Eczema Center

Q: Dr. Lio, please give us a brief background on yourself and why you chose to go into Dermatology, particularly why you chose to specialize in atopic dermatitis.

A: I have been interested in becoming a doctor since I was little, but once I got to medical school, I realized that it wasn’t so simple–there were lots of fascinating specialties to consider! Initially, I thought I was going to be a neurologist.  My research during college was all about learning and memory and I found the study of the brain to be extremely compelling.  However, during the second year of medical school we were exposed to a one-week lecture series on dermatology.  About 15 minutes into the first lecture (given by the great teacher and mentor Dr. Charles Taylor), I was hooked!  Interesting words (where else do you get to use terms like “ostraceous” and “serpiginous”?!), fascinating diseases, and lots of unanswered questions!  While in other areas of medicine there were pathways, cycles and genes that seemed to explain almost everything, dermatology was wide open… there was a lot of mystery!  That drew me to it and still does.  Atopic Dermatitis is perhaps the ultimate dermatologic disease: on one hand, we know so much about it and can do some things to help, but we still don’t fully get it and–try as we might–we can’t seem to get to the root of it to cure it.  YET, hopefully…  I found lots of patients and families struggling with eczema, and I decided to dive in to learn everything I could and try to help out as much as possible.  It’s been an incredible adventure so far: difficult, but deeply satisfying.

Q: How do you feel about alternative and integrative medicine as it relates to eczema? (Do you have any good recent research on treatments you can quote here?)

A: Part of what was frustrating for me was coming to terms with our fairly limited armamentarium of treatments for eczema.  After I finished my Dermatology residency, I decided to study acupuncture and Traditional Chinese Medicine to see if I could gain a new perspective and open the door for new treatments.  I spent a year with Kiiko Matsumoto and David Euler in Boston and completed the wonderful course called Structural Acupuncture for Physicians.  It opened my eyes to many things, most importantly the reality of “energy medicine”, which is what acupuncture is on the most fundamental level.  To that end, a few colleagues and I published a paper last year that was able to show some benefit for the itch of eczema–arguably the root of the disease–by using acupressure.  The study can be viewed here.  This led to looking into other forms of alternative medicine, and I am particularly interested in botanicals that can heal.  Lately, I’ve been very excited about the anti-inflammatory effect and skin-barrier-rebuilding powers of topical sunflower seed oil.  I’ve been recommending this combined with coconut oil, which is known to have some anti-bacterial properties which is also very useful in atopic dermatitis.  I’ve written a few updates on some of these alternative treatments, you can view them here – part one and part two.

Q: From what I understand, you are a pioneer in the world of eczema, founding the first integrative medical clinic specifically for eczema sufferers. What was the inspiration behind this amazing idea? Was it a difficult task to achieve?

A: At the end of the day, my goal is to help patients.  My thinking is that I want to take the best of every tradition to get people better.  In my time of intense focus on acupuncture, I found that the acupuncture approach did some things better than the “pure” Western approach; but for other things, not so much.  There was a part of me that was disappointed when a patient returned to my very talented teacher and was only a little bit better.  I had secretly hoped that this was “the cure”, and that I’d find a powerful technique to zap the eczema and make it go away for everyone… It didn’t quite work out that way.  But, I did see some things that were important and were being overlooked by many Western physicians.  That was almost a decade ago, but the idea was planted then for me: to use some form of integrative care to help eczema patients and families.  The Chicago Integrative Eczema Center is the realization of that dream.  It’s been a lot of work getting things organized.  I was lucky when I met Ryan Lombardo, who is a DAOM (Doctor of Acupuncture & Oriental Medicine) and also very interested in skin disease.  We shared a number of patients and began to meet to discuss treatment approaches. Before long, we realized that we should probably pool our resources and collaborate… and the Chicago Integrative Eczema Center was born. 

Q: What do you hope to achieve with your clinic? What is the general approach?

A: The Chicago Integrative Eczema Center has 4 main goals: First, to be a trusted source of information and education about eczema that is inclusive of alternative and complementary medicine.  Second, to be a place for holistic care of eczema, offering a range of treatments from a Traditional Chinese Medicine approach to the standard Western approach, and everything in-between.  Third, to be a place for patient support and connections.  We are closely allied with the National Eczema Association and their official Chicago Eczema Support Group, run by Erika Czopkiewicz and Nathan Jetter, two amazingly dedicated individuals. Fourth, to be a place to push the boundaries forward and learn more about eczema through research studies like the acupressure study mentioned above.  To meet these goals, in addition to collaborating on patients that we see in our individual clinics, we will have combined sessions where Ryan and I will see patients simultaneously and have guest speakers with questions and answers, and I will be the medical adviser of the Chicago Eczema Support Group as well.

Q: What services will you offer?

A: We will be seeing patients and, through Ryan, offering acupuncture, acupressure, herbs, nutritional supplements and other botanical topical treatments.  We also work with nutritionists, allergists, a hypnotherapist, and several other practitioners closely for when our patients need other types of expertise.  Part of what we are building is a network of providers who can work together and meet the need for holistic and integrative care, which is very exciting to me.  

 Stay in touch with the Center:

Website: http://www.chicagoeczema.com/

Twitter: https://twitter.com/ChiEczema 

Facebook: https://www.facebook.com/ChicagoEczema

About the co-founders of the Chicago Integrative Eczema Center:

Dr. Peter LioPeter Lio is a Clinical Assistant Professor in the Department of Dermatology & Pediatrics at Northwestern University, Feinberg  School of Medicine. Dr. Lio received his medical degree from Harvard Medical School, completed his internship at Boston Children’s Hospital and his dermatology training at Harvard. He has had formal training in acupuncture under Kiiko Matsumoto and David Euler, and has held a long interest in alternative medicines. He currently serves on the Scientific Advisory Board for the National Eczema Association. His clinical office is located at Dermatology & Aesthetics of Wicker Park.

Dr. Ryan LombardoRyan Lombardo received his Doctorate of Acupuncture and Oriental Medicine from the Midwest College of Oriental Medicine in Chicago, IL. The Doctor of Acupuncture & Oriental Medicine (DAOM) is the highest formal educational credential available in the field of acupuncture and Oriental medicine in the United States. Dr. Lombardo is one of 6 doctors practicing as a DAOM recognized by the State of Illinois and has been practicing acupuncture and Oriental Medicine in the Chicagoland area as a Licensed Acupuncturist (L.Ac.) and Master of Science in Oriental Medicine (MSOM) since 2003. Dr. Lombardo is a faculty member of Midwest College’s doctoral program, leading the Nutraceutical Science and Chinese Medicine Energetics curriculum.  His clinical practice is located at AcuHealth of Wicker Park.

How Quickly They Forget or Choose to Forget the Hard Times

Posted by Jennifer in Eczema and tagged with , , , , , , ,

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)

Posted by Jennifer in Asthma, Eczema, Guest Posts and tagged with , , , , , , , , ,

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

Quilted: A Poem About Living With Atopic Dermatitis

Posted by Jennifer in Allergies, Eczema and tagged with , , , , , ,
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.

Coping with Food Allergies, Eczema, and Asthma – A Parent’s Guide (Guest Post)

Posted by Jennifer in Allergies, Asthma, Eczema, Guest Posts and tagged with , , , , , , , , ,

Elika and I met over twitter, both enjoying each others comments about food allergies. I asked her to help us. To help parents managing health conditions like food allergies, eczema, and asthma. Living with these conditions is so overwhelming and we focus so much on our children that we forget to take care of ourselves. Please take a minute for yourselves, to read this post, you deserve it.

Bio: Elika Kormeili, is the founder of Center for Healthy and Happy Living. She launched the company after struggling with her own food allergies and realizing the toll a restricted diet has on your emotional well-being. Elika wanted it to be as stress-free as possible to get quality counseling. Through her professional and personal experience, she realized that emotional health needs an integrative approach. Elika obtained her B.A from the UCLA in Psychology and an M.A. from Pepperdine University. She is passionate about working with individuals (just like you) who struggle with food allergies/sensitivities, stress-induced health problems, digestive health problems, food cravings, and emotional eating. Please visit her website or Facebook page and let her know how she can be of service to you.

Coping with Food Allergies, Eczema, and Asthma – A Parent’s Guide

I remember as an adult telling my mom about my food allergies and her face dropped. The wheels in her head were already turning thinking about how she will adapt her recipes so that I can eat (thanks mom).  I started reciting what I can and cannot eat – I paused and asked if she wanted me to continue, she looked at me and very reluctantly said “yes and no”.  My food restrictions were also causing her stress and anxiety.

Moms and dads you do so much great work protecting your kids with food allergies, eczema, and asthma and it made me wonder who takes care of you?  Here are a few tips just for parents.

1)    Work on your acceptance.  It is unfortunate, but you have a child with “special needs” and with that there comes a grieving period.  Sometimes, children are born with needs that weren’t anticipated and it challenges you as a parent. It takes more work on your part and you may feel a bit resentful.  Go ahead and grieve, grieve for the quality of life you wanted and the foods that you can no longer have in your home or the vacations that have to be placed on hold. Once you’re done grieving, accept the situation and deal with the hand you were dealt.

2)    Develop a self-care practice. You do so much for your family and probably don’t stop until you literally drop.  Learn effective ways to manage stress, from going for a walk, breathing exercises and eating healthy.  Remember that you are not invincible and even a superhero needs down time.

3)    Laugh every day. It’s the cheapest medicine and it really does work wonders. Guess what? You don’t even need a reason to laugh-just laugh for the sake of laughing, pretty soon it will be genuine laughter.

4)    If you are on this website, then you know the power of social support. It helps to connect with others and share your experience.  From learning about the experience of others you feel less isolated.

5)    Gratitude Attitude. Every night before you go to bed list 3 things that you are grateful for.

6)    Recognize when you need to talk to a professional.  You may benefit from talking to a licensed therapist if food allergies, eczema, or asthma are causing you or your child to avoid social situations, are impacting your relationships, or if your child is being bullied at school due to one of these conditions. If the daily anxiety of caring for your child becomes overwhelming, seek out a professional and don’t think twice.

7)    Last but not least, in case you are reading these tips and thinking “I don’t have time to do this” remember – you don’t have time to get sick and if you were not well then you are not able to fully be there for your family.

Thank you Elika. Those are some powerful tips, many of which I need to work on myself, like the gratitude attitude. What a great idea to remind myself what I’m grateful for everyday. It’s taken me a long time to get a proper handle on my self-care practice, but yoga and reading help to keep me in check. Social support is a big one, at least for me. I’ve connected myself with a large network of parents managing eczema, allergies, and asthma – mainly online through Facebook, Twitter, and this blog. It’s been such a relief to communicate with these parents – to share our frustrations, worries, and hopes.

Which of these tips have you mastered? Which tips do you need to work on? Do you have any tips of your own you’d like to share?

Surprise Sale – Day 21

Posted by Jennifer in Eczema and tagged with , , , , , , , , , , , ,

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…

Guava Mitts – Save 50% off these adorable scratch mittens for babies (up to 22lbs.) with reversible modern prints. A velcro strap keeps these mittens on your little Houdinis. Sleep in peace knowing your little one’s hands are secure from scratching.

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

SURPRISE21GM

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 15

Posted by Jennifer in Eczema and tagged with , , , , , , , , , ,

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…

WrapESoothe products – 20% off the retail price of $22.95-$59.95. These brand new wet wrapping essentials just arrived this week and are available in two styles: suits (for sizes 3T and under) and sleeves (for children and adults). They were created by an eczema mom, so not only do they make wet wrap therapy a breeze, they are super soft, comfortable and completely non-irritating. Plus, they are made with sustainable, Okeo-Tex certified TENCEL fibers made from eucalyptus wood.

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

SURPRISE15WS

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

An Incredible Experience with National Jewish Hospital’s Atopic Dermatitis Clinic (Guest Post)

Posted by Jennifer in Allergies, Eczema, Guest Posts and tagged with , , , , , , , , , , , ,

Nancy, of Real Food, Allergy Free, and I connected via an eczema Facebook group, around the time I was starting The Eczema Company. When I learned that she was heading to National Jewish Hospital with her daughter, I was so excited for her and eager to hear first hand what her experience was like. NJH has such a unique, team approach to atopic dermatitis. I was sure you’d be just as curious as I was about how the hospital’s specialized clinic helps parents and children gain control over their eczema. So, I was thrilled when Nancy agreed to share her story with us. Thank you, Nancy!

Bio: Nancy is a home-schooling mom of four beautiful children.  Her youngest struggles with severe eczema.  Nancy is passionate about the real food movement, but is also a real mom with a limited amount of time and money.   Her blog, Real Food, Allergy Free , features fast, frugal and (mostly) healthy allergy-friendly recipes that even “normal” people would enjoy.

Born just a few days after her due date, Bella was a content and healthy newborn.  At six weeks old her skin turned bright red.  It almost looked raw.  I didn’t rush her to the doctor until it started oozing yellow fluid.  The doctor diagnosed her with infected eczema.

I remember thinking it didn’t look like the eczema my other children had.  My other children had small raised patches of itchy skin.  Bella’s entire body and bald head was bright red and oozing.  But then again, my other children never developed eczema this young nor had it been infected.  We were sent home with oral antibiotics, topical antibiotics and steroids, and a referral to a dermatologist.  That was the beginning of an exhausting five-year battle with the worst case of eczema I had ever seen.

As a newborn, eczema didn’t seem to bother Bella, but as she grew older and developed motor skills, the itching and scratching never seemed to stop.  All of her clothing and sheets were covered in blood stains from the wounds she opened while scratching.  We saw multiple pediatricians, dermatologists, and allergists.  Allergy testing showed she was allergic to egg, dairy, soy and nuts, so we limited her diet accordingly.  We tried every holistic approach we could find including consulting naturopaths, trying the GAPS diet, homeopathy, nutritional supplements and UVB therapy.  I was thankful that these treatments made the days somewhat tolerable, but the nights were unbearable.

Sometime in those first years Bella developed night terrors.  Even before she was able to talk in complete sentences, she would scream “no” and “ow” while tossing and turning like she was in pain.   Because she dug into her skin like a crazed person, my husband or I had to sit with her and do our best to stop her.

The older she grew, the more frequent the night terrors occurred.  It came to the point where there were more night terrors than sleeping.  Two hours of sleep per night became the norm.  We just couldn’t do it anymore.  When Bella was four years old, we asked the pediatrician for something to help her sleep.  After trying herbs and Melatonin, the doctor prescribed Clonodine.  It helped, but she was still having a couple of night terrors per night.  The doctor mentioned the next level of medication he could offer was Prozac.  We were not willing to go there, so we decided to be thankful for what sleep we were now getting.

I HATED that my child was so dependent on medication and yet was still miserable. My pediatrician and my dermatologist both independently recommended I take her to Cincinnati for a therapy that was basically chemotherapy.  I drew the line there.   I would have to be happy with where we were in this battle.  There were no options left.  That is until I joined a Facebook group I saw Jennifer was part of called “eczema parents.”  Everyone there was talking about a two-week program for children with severe eczema at National Jewish Health in Denver.

Bella in her wet wraps at NJH

I cannot explain in words the emotions I felt when hearing about this program.  I saw before and after pictures that blew my mind.  They were helping children live normal lives without extreme medical intervention.  I wanted to hope, but I was so afraid of disappointment.  I had no idea how we would afford a program like this, but I knew we had to give it a shot.

A phone call later I learned that National Jewish has a unique approach.  Every patient is assigned a team of doctors and nurses including an allergist, dietician and psychologist with specialized training in Atopic Dermatitis.  The skin is treated with hydration therapy (wet wraps) while extensive testing is completed to find triggers that cause the eczema to flare.  The child also attends individual therapy and group art therapy, and the parents attend group therapy.  I was thrilled to learn that our team would also include a sleep specialist.

National Jewish Health was a true answer to our prayers!  Through the miracle of wet wraps, Bella’s skin was 99% clear within three days!  You can read a daily log of our experience here.

The rest of the two weeks were spent teaching us how to maintain her new skin and testing and challenging her food allergies.  To my utter and complete amazement she passed all of her food challenges.  Not only did we leave there with new skin, but we left with only one dietary restriction: nuts.

Going into this program, I felt fairly confident that they would help Bella’s eczema and maybe open up her diet a bit, but I had no idea if they could help with the night terrors.  In just a few consultations, the sleep specialist gave me the hope I was looking for.

The sleep specialist explained that night terrors were nothing more than the child getting stuck between stages of sleep.  Night terrors are usually triggered by lack of sleep.  It was normal for kids with severe eczema to wake up from the itching several times per night.  She was sure that once we got the itching under control, the night terrors would go away.  We would no longer need medication.  To my amazement she was right!  Bella started sleeping through the night while we were there.  In the five months since, she has had three or four night terrors, and they were obviously connected to not getting enough sleep (sickness, house guests, etc.).

Should you take your child to National Jewish?  Absolutely!  Can you imagine walking into a hospital where all of the doctors just “get it?”  Everyone from the doctors to the nurses and even the sleep specialist, who isn’t normally part of the team, understood exactly what we were going through, and were confident they could help.  There is no cure for eczema, but the team at National Jewish has come pretty close.  Our lives were forever changed by the team at National Jewish.  I only wish I had known about it sooner.

Bella is all smiles with her eczema now under control.

I Listen to My Intuition and I Don’t Give up on My Child: I am My Son’s Health Advocate (Guest Post)

Posted by Jennifer in Allergies, Eczema, Guest Posts and tagged with , , , , , , , , , , , , , , , , , ,

 

Athena inspired me on the Itchy Skin Support Forum where she shared the countless natural therapies she’s tried to help heal her son’s eczema. I was impressed with her fighting for her child and not giving up until she finally healed his skin. We know it’s all about trial and error to find what works for your child, but this momma has been through it all. I hope her story will inspire you too!

Athena with Andrew today – beautiful, healthy skin.

Bio:  My name is Athena Goodman and I’m 33 years old.  I’ve been a cardiac nurse for 10 years and I’m a reiki practitioner.  I love to read, cook, and do yoga and meditation.  Now that I’m a new mother, my new hobbies are cooking full-time, and chasing after my son.

Diagnosis

My battle with eczema started when my first child was born.   Even though he was born a month early his Apgar score was 9 out of 10, so he was deemed healthy.  His skin was perfectly fine at the time.  Then I noticed when he was about two weeks old he developed a pretty severe case of cradle cap and his face would get red and blotchy.  The skin on his arms, chest and legs started to get dry and flaky.  Over the weeks it got progressively worse and when he was examined by my family doctor he was diagnosed as having atopic dermatitis.  As any parent with a child who has eczema I read everything I could about this condition.  I knew the use of steroids would only cover-up the symptom and not address the root cause of the eczema.  I was also appalled that the side effects of the steroids were no better than the condition it was trying to prevent.

Are Food Allergies to Blame?

I started to suspect a food connection when I ate a huge plate of pasta with tomato sauce for my birthday and within two days, Andrew’s face flared up so bad, in some places it started to ooze and in other areas there were scabs.   Since I hadn’t had pasta in over a month, I suspected it was actually the tomatoes.  I removed tomatoes from my diet for three weeks.  I then told my husband if our son’s face flares up again after eating some pasta with tomato sauce, we’ll know tomatoes are the culprit.  I intentionally ate a modest amount of tomatoes to test my theory because I was afraid his reaction would be severe again.  After the second test, two days later, his face flared up and I knew without a doubt that various foods were triggering my son’s eczema and I started thinking about any other foods Andrew could have been reacting to.  At the time I was consuming foods with tomatoes frequently, but never in large quantities, which is probably why his skin flared up, improved in a few days and then would suddenly flare up again.   He was two months old at the time and even despite taking out tomatoes, his condition never resolved. I took Andrew to see a naturopath in December when he was about 5 months old. He recommended supplementing with probiotics and essential fatty acids.  The next day after Andrew’s first does of  primrose oil (for EFAs) I could see the redness spread across one cheek and the following day both his cheeks started to ooze. When I read the full supplement ingredient list I found there was citrus flavoring. Since citrus is very acidic like tomatoes, I knew it was causing his reaction.

Constant Itching & Rubbing

He was so itchy during the night he would constantly move his head back and forth rubbing his cheeks against the

Andrew during a flare up.

bed sheet.  It got so bad it looked like he had second degree burns to his face and we feared that he would have an infection.  In the middle of the night we took him to the ER and the physician recommended we continue what we were previously doing, cleansing the site with normal saline and trying to apply gauze to protect the area.  I learned to improvise quickly.  To stop Andrew from using his hands to scratch his face we had to swaddle him before putting him in a sleep sack.  It didn’t stop him from turning his head side to side to relieve the itch and it only aggravated his skin more.  I don’t know how the idea came to me but I used two silk pillow cases to prevent his skin from breaking down and to give it time to heal.  I cut a hole in one pillow case and put it over his sleep sack and put the other pillow case beneath his head.  No matter how he moved his face it would always touch the silk.  The plan worked and it took a few weeks to really see the improvement.

Green Tea, A Family Remedy

At that time I was also using the steroids sparingly to expedite the healing process.   I went through so many trials and errors to treat Andrew.  I bought skin care products and other supplements to try, but they only made things worse since his skin reacts to citric acid, which I later found out is an ingredient in almost all skin care products can be disguised as “essential oil.”  At this point both his legs started to turn red and ooze. I knew I had made things worse.  It was so hard for his legs to heal because he was constantly scratching them. We ended up applying steroid cream, gauze and then pressure bandages to both legs for several weeks.  Both his cheeks started oozing again and instead of using steroids I used organic green tea bags, a family remedy suggested by my mother, and applied it to his face while breast-feeding him during the night.  I didn’t saturate the tea bag, just added enough water so that the tea bag was wet.  This remedy definitely worked because I used it several times during the night and by morning his cheeks had stopped oozing.  My mother and I also performed reiki on Andrew and I could see that it helped calmed him down when he was having a bad night.  I can’t tell you how many times I must have cried.  Bathing Andrew was a nightmare, I always had to be in the tub with him to prevent him from scratching his body.   Dermatology was no help, not only did they try to prescribe stronger steroids, they completely dismissed the idea that eczema could be a reaction caused by food.

Bone Broth & Chicken Liver as Baby Formula?

The new year arrived and there was no significant changes in his skin, it was beyond frustrating.  The whole thing was mentally, physically and emotionally draining.  I had to be by his side constantly to stop him from scratching.  I didn’t take him out much and if I did, there had to be two people in the car, one to drive and the other to sit in the back and monitor him. The turning point was when I started doing my own research found two resources talking about a hypoallergenic formula made with bone broth and chicken liver if dairy could not be tolerated. When I started giving Andrew the new formula I notice his whole face did not turn bright red like it use to and then I realize dairy was probably another food contributing to his eczema.  Eight weeks later, his eczema and cradle cap still persisted.

Elimination Diet

Then someone loaned me the book called “The Core Diet for Kids” by Dr. Stephen J. Gislason. I started the elimination diet: no dairy, eggs, soy, corn, wheat, or gluten.  The diet was extremely basic, rice, chicken, turkey and a handful of vegetables.  I did this diet for about six weeks and while I found little improvement, I did clearly see certain foods exacerbated his eczema, such as; peas, sugar, fish, etc .  Dr. Gislason stressed that if no improvement was seen within a few weeks, all grains and chicken should also be removed from the diet. I was in denial and it didn’t occur to me Andrew could be allergic to rice but when I  finally took it out of my diet, his scalp cleared up in four days.  I was astounded and elated. When I brought this up to dermatology she actually acted annoyed and again stated food had no connection to eczema.  I just told her what I observed and what worked for Andrew.  I think she was just miffed that her regiment didn’t resolve his skin issues.  When Andrew was finally tested for possible food allergies at 10 months he tested positive for dairy, eggs, soy, wheat, peas, (peas and peanuts are in the same family so I was told to avoid all nuts for now).  I asked the allergist to test for citrus and other nuts but she stated his skin was too sensitive to do the test.  All the foods I suspected he was allergic to were verified by the allergy test. It was unfortunate that it took a test to validate what I already knew.

What I want to stress is that your intuition is rarely ever wrong and following my gut instinct was what saved me and my son.  All I had to do was look at my son’s face to know what food his body could tolerate and what it couldn’t.  Having to deal with family members that didn’t take it seriously just added to my stress.

Leaky Gut & Candida

I knew I found the answer to Andrew’s eczema when I came across an article on Gut and Psychology Syndrome by Dr. Campbell-McBride via the Dr. Mercola website.  The premise of her book was that the majority of your immune system resides in your gut and when your gut is compromised it can affect your body in many different ways.  When I read the chapter on leaky gut, candida yeast, eczema, and factors that contribute to the condition, for the first moment in a long time I felt a huge weight lift off my shoulders.  Usage of different antibiotics over the years, long-term use of birth control, consuming too much sugar and processed foods, and using medication such as ibuprofen, can lead to a leaky gut and candida overgrowth.  I can relate to doing all of those things.  Andrew was born a month early so he probably wasn’t fully developed when I was given several doses of penicillin during my labor and I had taken ibuprofen for several weeks after the delivery.  I truly believe the antibiotics and pain medication pushed his system over the edge.

GAPS Diet and Soap Alternatives

I was also glad that I never vaccinated Andrew.  If your immune system resides in the gut I knew the vaccines would further stress it and do damage.  The GAPS diet finally made a dent in Andrew’s condition, feeding him only protein, carbohydrates from vegetables and healthy fats cleared up his face.  Grains, starches such as potatoes, and certain squashes were not allowed on the GAPS diet.  I also noticed starchy foods caused Andrew to have a reaction.   It was the essential fatty acid (cod liver oil rather than primrose) that brought his skin back to normal.  We stopped using soap during bathing, since soap stripped Andrew’s skin of natural oils.  Adding organic coconut oil to the bath water helped keep the moisture in.  His skin was better, but the eczema remained in spots.

Naturopath, Holistic Nutrition & Parasites

We went to see a different Naturopath who had Andrew do a Vega food allergy test (electro-acupuncture method). They also tested him for candida yeast overgrowth. His score was too high, 23/30, as I was told his score should be below 10.  I came across a website called Healing Naturally by Bee, the entire website is dedicated to healing and riding the body of candida.  Her recommendations for diet are similar to the GAPS diet, but more limited.  We started the diet and I saw greater improvement with Andrew’s eczema following Bee’s diet advice. The only dairy that was allowed was ghee and even Andrew couldn’t tolerated that. Giving him healthy fats such as coconut oil, animal fats and olive oil was essential for his development and better health.   Having Andrew treated by a holistic nutritionist also sped his recovery.  Putting him on probiotics geared towards infants and digestive enzymes (TriEnza) significantly reduced his itchy symptoms.  She also brought up the possibility that Andrew could have parasites.  I read the book “Guess What Came to Dinner” by Ann Louise Gittleman, and it opened my eyes that parasites could be the root cause of so many different diseases.  I did not put Andrew on the anti-parasite cleanse because he was too young, but I have learned that mothers can pass parasites to their baby in the womb.

Where We Are Today: Improvement

At present, I have not used steroids for Andrew’s face in over three months.  He’s no longer swaddled, but wears silk pajamas and sleeps freely in a special sleep sack for infants with eczema, called Bamboo Bubby. Unfortunately the material does not keep Andrew cool enough, so during this summer heat, he developed a bad case of heat rash.  Buying an air conditioner definitely helped.  The only moisturizer I use for his skin is plain organic shea butter and we use a chickweed ointment for the eczema and the itchy areas.  I no longer have to sit in the bath with him.  He doesn’t scratch himself even once when bathing.  I still do not use soap, only water and his skin hasn’t suffered due to lack of soap.  I can drive him in the car by myself, but he has to wear long sleeve shirts and pants.  Because the summer heat aggravates Andrew’s eczema, I dress him in a short sleeve top with a tubular stockinette bandage around each arm so he can stay cool, but if he scratches the inside of his elbows at least the area is covered.  I’ve been told that the areas that heal last are the inside of the elbows, behind the knees and top of the feet.  I realize it will take more time for those areas to heal.

Advocating for My Son

Looking back I can say there was definite personal growth from this experience.  It’s still not easy, I do the bone broth every week for his formula and I have to prep his meals in advance.  When I go out with him I have to bring food from home, I have never taken Andrew to a restaurant.  Other than the milk formula I used to feed him, he has never eaten any processed foods.  I’m glad I did not blindly accept the doctor’s recommendations and give him stronger steroids, instead I became Andrew’s advocate.  I did my own research and became instrumental in his healing process.  I ignored those in the family that questioned the alternative choices I made.  The fact that his improvement has been gradual and steady with no setbacks, unless he eats something he is allergic to, is all the proof I need.  Everyone who has met Andrew has told me he looks healthy and is advanced for someone his age. He has never been sick.  No colds, no ear infections, nothing.  I believe this was largely due to the diet I’ve been feeding him.  The most important thing is the well-being of my child and I can say I’m very proud of what I’ve accomplished and the knowledge I have gained during this challenging experience. I am still physically, mentally and emotionally exhausted, but when I look at my son and think of all the progress that has been made I can’t help but smile more often now.

Below are some of the websites that have assisted me in healing Andrew.

The Weston A. Price Foundation

Dr. Natasha Campbell-McBride on GAPS Nutritional Program

GAPS Diet

Healing Naturally by Bee

Houston Enzymes - TriEnza Digestive Enzymes

Custom Probiotics – Highest Potency Probiotic Supplements

Bamboo Bubby Bag  (Coming soon to The Eczema Company for US and Canadian customers.)

One Mom’s Eczema Journey: To Hell and Back (Guest Post)

Posted by Jennifer in Eczema, Guest Posts and tagged with , , , , , , , , , ,

One day I was happily surfing the internet looking for eczema bloggers to follow and I happened across one that stopped me dead in my tracks. Her stories were horrific and the photos were worse. Her son had what is being labeled as “red skin syndrome,” a cortisone cream “addiction,” and this mom was not withholding any of the gruesome, but shocking details of his recovery. I’ve asked her to share her story with us, but please be warned that it’s not for the faint of heart, neither are the following photos.

**Take note that Kelly worked with her son’s general practitioner while withdrawing cortisone from his system. Due to the high potential for severe infection and other complications, please consult your physician before attempting the same.**

—

From The Boy, the Greek Fire, and Me.

One Mom’s Eczema Journey: To Hell and Back

I have a little boy, a very typical little 8 year old boy, who loves Football, Star Wars, any joke involving gross bodily functions and Mario Kart.

What was not quite so typical, was his appearance in October 2011.

My boy was a scarlet red all over his entire body (with the exception of the palm of his hands that remained glaringly white) the skin of his neck had gone and you could see what I assumed to be the capillaries underneath.

Sections of his body were bleeding….weeping, but never scabbing. His hands and ankles were swollen, and his eyes were puffy.

Sometimes the redness would go a mottled purple color, which frightened me. All his lymph nodes were up over his whole poor ravaged little body.

He could not walk. He could not even turn his head. He could barely eat as opening his mouth became too difficult and his ears hurt constantly.

He shivered no matter how hot the house was, I could walk around in shorts and a t-shirt and the poor boy would be swaddled on the sofa under blankets.

The weeping some days was unreal, it would literally run off him, sometimes so much around his eyes he could barely even see.

Now reading that I guess the assumption must be that my boy must have been ill? Perhaps you would think to look at him he had been badly burnt?

Well what would you say if I said that the dermatologists considered that my son just had ‘Eczema’.Incurable, extensive, badly managed Eczema?

What my son had, was not Eczema, it was Red Skin Syndrome.

I guess our story has been a typical one for many patients with Red Skin Syndrome, my son was diagnosed with Eczema under a year old, it was no big deal, we were prescribed various emollients, and a tube of 1% hydro-cortisone, we had various allergy tests done, we saw dieticians, nothing showed up, and using the hydro cortisone the eczema went away beautifully.

Then over the next few years, the eczema was always there in the background but never an issue, by the time he was 3, the 1% was no longer strong enough and we moved on to 2.5%, always stepping up and stepping down diligently, as we were taught. Again the eczema was well controlled, not an issue, not a problem. Perhaps I spent more time with him than I did with my daughter, the whole bath/cream/dress thing took a bit longer, it may have been inconvenient but not an issue. By the time he was 5 again the eczema was becoming harder to control so we stepped up again, and then when he was 7, we stepped up again.

By March 2011 something was clearly wrong. No matter how much of the steroid cream I used, nothing would clear it, at this time we were using betnovate and eumovate, and still the eczema was spreading and getting worse. My son was cold all the time and the lymph nodes became enlarged. I went back to the doctor in a panic, and this time we were prescribed our first course of prednisilone, I didn’t want him to have this but the GP assured me it was the best way, and that they would arrange for me to revisit my dermatologist.

Between then and September 2011, my son had 4 tapering courses of prednisilone, we were prescribed more steroids, we kept going back to the dermo’s by this point I was begging for help, I would sit and cry in the doctors office. About this time the dermo’s decided that perhaps they would try the immuno suppressant drugs, and I came home with a tube of pro topic but I was uneasy. I asked repeatedly if my son may have developed an allergy to the steroids, as I was beginning to make the association between the increase of steroid use and his deteriorating condition. I was told I being ridiculous, it was unheard of, that it must have been my fault, I wasn’t using the steroids correctly, I wasn’t using enough. Instinctively I knew something was amiss, I cried myself to sleep at night scared that he had some kind of awful undiagnosed illness.

That September I decided enough was enough and stopped all Steroid use, we tapered down our last course of prednisilone, and my husband and I decided from that day onwards we were going to try and keep away from the steroids just to try and see how my son would be without the use of any kind of steroids.  To say what followed was a shock would have been the understatement of the decade.

At some point soon after I stumbled across Kelly Palace’s website, with the links to Dr. Rapaport’s research, and it was a real Eureka moment, it was a massive relief for me to see that actually my boy wasn’t ill, he was just going through topical steroid withdrawal and addiction.

Although the change wasn’t overnight, it was pretty quick, you do get some very alarming symptoms I would say within a couple of weeks, and it is only fair to say the withdrawal is truly hideous.  Thankfully children tend to do better than adults, but you are still looking at roughly a minimum of 16 weeks of total, unmitigated Hell.  It begins with the skin becoming red everywhere, even in places where you have never used steroids or previously had eczema, it is accompanied by problems with regulating temperature, very swollen lymph nodes all over the body, some people get very bad oedema, (thankfully we only got some of that), and copious and hideous weeping.  The fluid would literally run off him in rivulets (again not everyone gets that), once you have got through that phase you progress to the shed, when masses of skin will come off, this is very uncomfortable and tight, and it can also be accompanied by joint pain.

Obviously with children the chances of infection increase, as by their very nature, kids will scratch and rub.  Atrophy is pretty spectacular too. We literally did not have one good day for 16 weeks.   Basically these flares repeat until the body learns to regulate itself.

Initially I tried to keep him at school but it just wasn’t possible, so he missed three months of schooling.  The impact on a family cannot be underestimated; we had no life whatsoever for 16 weeks, just hospital and doctor visits.  The change for the better is very gradual, one of the founders of ITSAN likens it to watching hair grow, you do not see it happen but it does all the same.

Thankfully the support of Kelly Palace, our family GP, and the ITSN support group was invaluable, however it has left me angry that this syndrome is not widely acknowledged. I only had one dermo even admit that it existed and even then she said that my son could not be suffering with it as it is so rare.  And actually the response from other parents (whom also had children with eczema) has been shocking, at times I was labeled ‘deluded’, ‘abusive’ and ‘neglectful’ for making the incredibly hard decision to withdraw the steroids, with the awful foreknowledge of what was likely to come.

A drastic improvement! He’s still healing.

And therein is the rub, I don’t think actually it is rare. I think it is far more widespread than the medical community can recognize, and until more forward thinking and enlightened Doctors recognize this, there will be more people suffering with ‘incurable’ Eczema.

To add as a postscript, We are now into our 8 month of withdrawal.  Boy now looks pretty normal, he still has eczema and some scratch damage but is living life again to the full without his skin holding him back, his skin is better than it ever was even whilst still on topical or oral steroids, and actually I am pretty confident even the ‘bad’ areas like the wrists and hands will be much better in time.  The flares still happen occasionally, and it is annoying when they do, however each flare is shorter than the last.

My son will always have eczema, but he will no longer be defined by it.