Skip to content

Posts tagged ‘eczema parents’

How Does One Family Go GAPS? – One Pot of Soup at a Time (Guest Post)

How Does One Family go GAPS? – One Pot of Soup at a Time  (Guest Post)

By Ronit Feinglass Plank (bio below)

Well, it’s happened. I, a former vegan, have animal parts in my refrigerator. Seriously, there are all kinds in there: steaks, turkey breasts, lamb shanks, fish filets, sausage, ribs, I’m even thinking about getting a liver if it will help. I went from slow-cooking hearty soups brimming with legumes to slow-cooking the knuckles and joints of cattle for this new modified GAPS-Paleo-Auto-Immune type diet we are trying for my eczema and allergy-addled son.

Those of us who face chronic eczema know sometimes no cause can be found for the itching that keeps our children suffering and awake at night. After years of trying to get to the bottom of things with food elimination and scores of naturopathic visits, then three days a week light therapy with no measurable result except the faint charred smell of something burning every time my son got out of the UV booth, last fall my husband and I finally agreed to the dermatologist’s recommendation to put our son on immunosuppressive drugs.

These are strong. And not to be used for long periods of time because they can be dangerous. Yet for five months now my son has finally been able to sleep at night, and my husband and I learned for the first time since before our six year old was born what rested feels like.

But the whole time our son has been on the drugs, I’ve known we were only being granted a short respite from the relentlessness of his chronic condition. Like ducking under an awning during a downpour, I knew we’d eventually have to go back out into the storm.

So now, in anticipation of weaning him off these drugs, and after talking to other eczema moms, I have found this new way of eating—heavy on restorative animal fats, broth and collagen–to possibly be my last hope. In lieu of feeding my son gluten, sugar, grains, dairy products, eggs, legumes and soy, I’m to fill him up on nourishing meats and vegetables so his sensitive body can repair.

These days I’ve got all kinds of bones simmering and clinking around in pots; I feel like some kind of witch stirring my cauldron into the wee hours, scraping gelatin off of soup-softened joints and knuckles and harvesting marrow to blend up with fat so I can sneak into foods my son might eat. I’ve literally caught myself giggling while cutting up beef tallow, plotting how to slip chunks of it into his school lunches.

I am an all or nothing, a do it right or don’t do it at all kind of person and I’ve gone into hyper drive over my health challenged son. I really, really wish I could eliminate just a food or two and see results, but it’s not that simple for us. It never has been. For some kids with atopic dermatitis kids, there is not merely a trigger or two. As my (many) doctors have reiterated as they shake their heads over my son, he’s just unlucky. There is no magic bullet, no “one” thing that will put a stop to this, though for years I have been searching for it.

Maybe this new way of eating will make him better. I am pinning my hopes on it. It can’t hurt, right? Almost no processed food and actually cooking for my family, as in not ordering in, not buying take out or pre-made grocery meals. Tough for this New York girl, city of all night diners, home of the 7:00 delivered breakfast sandwich, the single cookie at midnight from the coffee shop on the corner because, really, it’s too hard to get off the couch. I’m talking the full on planning what to buy at the grocery store, then going to that store, buying it and—wait for it—cooking it.

My family eating it, now that’s another story.

  • My homemade blueberry Jell-O was not a hit. The kids spit it out after one chew.
  • My homemade almond milk: Rejected.
  • Home-ground pumpkin seed flour and banana mini muffins: Rejected.
  • 24-hour beef broth: Rejected.
  • 24-hour chicken broth: Rejected.
  • 2-hour chicken soup: Consumed. Progress at last!
Homemade Jell-O

Homemade Jell-O

When I got the okay from our naturopath to add a little white rice into our son’s diet I immediately cooked it up in the really good 24-hour chicken broth I had boiled. I added extra smears of chicken fat, schmaltz my people call it—my people being east coast Jews. I look at it richly: does it hold my salvation? How much can I disguise in my son’s food before he notices? Do my clothes reek of it? I was at the dentist’s office this week and swore I picked up the fatty mineral scent of boiled animal. Could it be trapped permanently in my nostrils? I smell bones everywhere.

Feeding your family the #GAPS diet. Read this tale of perseverance and success! @eczemacompany #eczema

Click to tweet

The good news is a month into this I am still cooking up a storm. I research recipes and menu plan and shop and concoct all kinds of strange muffins from  applesauce and seeds.  And despite the late nights and greasy dishes, I feel calmer.

Doing all this makes me feel proactive. I can’t change my son’s genetics or take the pain on for him, so I latch on to the things I can do and I go like gangbusters.

I know from all these years of fighting the good fight that the end result may not be everything I ultimately had hoped for. But when you’re dealing with a disease that is relentless; that wears you out and crushes you for the pain it causes your kid, even a little improvement is worth it. Feeling like we are doing something to help make our children’s lives better is so much of what it is about.

Ronit

 

Bio: Ronit is a writer and mother of two whose youngest has faced eczema, asthma and allergies since birth. She is well versed in both western and eastern treatment modalities, having tried most in her quest to treat her son. Her essay “I want to heal my son so badly” was featured on Salon.com 

Her work has appeared in Brain,Child Magazine, Lilith, Niche, and The Iowa Review and is forthcoming in the anthology Best New Writing 2015. You can follow her and find links to her essays and fiction on  Facebook

Battling Eczema: A Family Affair (Guest Post)

I think you’ll find today’s guest post interesting as it’s told from a sibling’s perspective. Rarely do we hear about how a sibling’s battles with eczema affect the other siblings….and even more rare is to hear about the experience first hand from one of the brothers or sisters. This story touches my heart as it’s clear how much these children cared for their brother as they would do anything to help relieve his suffering – even behind their parent’s backs!

- Jennifer

Battling Eczema: A Family Affair (Guest Post)

by Malvina Beker (see bio below)

“Wow, that looks terrible!” The doctor started to say, looking at my brother’s exposed stomach that was covered in red patches, scabs, and puss.  My older brother Eugene and I had decide to take matters into our own hands and take our younger eight-year-old brother, Milan, to the doctor our selves.  His rashes were just completely out of control and nothing that my parents were doing was helping him.

Mavina's brother with moderate eczema flare-up.His rashes began very early on, when he was about six months old.  My parents had no idea what the patchy rashes were or where they had come from.  He had struggled with them ever since.

What started off as little patches began to formulate to bigger patches.  It would appear seasonally around the folds of his skin and had gotten my parents attention from the beginning.  They went to the doctors who had confirmed that indeed these patches looked like eczema and prescribed cortisone cream.  Since they had never seen or heard of eczema before, my parents didn’t know how big of an ordeal it would be. My parents started using the prescribed cream with much caution, being very uncomfortable with it because it had steroids in it.  More so than treating the rashes, they wanted to prevent them from resurfacing.  My poor brother went through all sorts of preventative methods that my parents had tried, including homeopathic medicine, diets, hypnosis, even a trip to the dead-sea, but the patchy rashes continued to come back, and what was worse, the older he got, the less control they had over them, since my brother would scratch at them whenever they would appear. By the time he was eight-years-old my brother was being wrapped like a mummy for bed to prevent him from scratching.  His stomach especially was a problem.  My parents had no real direction or answers on how to battle eczema and had given up going to the doctors.

And so, my older brother and I had snuck him off to see a doctor hoping that we could find something to help control the eczema.  The doctor prescribed cortisone yet again.  “Unfortunately there is not much else that will help, especially because he has an infection in the area from all the scratching.”  The doctor then had a chat with him and told him to  be a bit more responsible about his eczema and encouraged him to try to control his scratching urges.  We were once again back to square one. To treat the really bad outbreaks we resorted to using the cortisone cream, but in the meanwhile I started to help my brother with some easy solutions to prevent the outbreaks in the first place.  These easy solutions included restricting any perfume based soaps from ever touching his skin and during a scratching urge, I insisted he bathe or shower or put ice around the itchy area.

My brother’s eczema was something that everyone in my family had suffered from and lived with right along with him.  It was a real ordeal for him in his daily life.  He had to be wrapped to go to bed, he even wore wraps around his body during the day sometimes.  He didn’t feel comfortable going swimming and exposing his stomach to anyone, and did not like discussing his eczema either.

With time however, eventually, the eczema sort of stopped coming on as strongly.  He was lucky that there were no scars left behind from all the scratching that he had done, and with age, had gained control over his rashes whenever they would come back.

As my brother grew into his teenage years, his eczema was like a forgotten dream for me.

And then I gave birth to my child, Alyssa.  A few months later, I almost had a melt down when I noticed the very same patches of red rashes forming on her skin.  I made an appointment to see the doctor right away, there was no way I wanted to go through this again.  The doctor didn’t seem concerned at all.  She prescribed yet again, more cortisone cream.  Was there no other solution?

My husband found a more natural cream, that had no steroids in it, which I started to apply at once.  I didn’t bother with the cortisone and stuck with applying the cream every time I felt the eczema patches forming on her skin.   Our battle to control eczema continued as I noticed my one-year-old daughter, Emma’s, skin began to break out too, but by then I knew what I was in for.   I have now incorporated a daily routine with my kids to always check their skin after they’ve had their baths, to look for any potential patches forming, and to put cream around those patches so that they don’t spread or continue to form.  Neither one of my girls have ever experienced anything remotely close to what my brother had, and I hope that we can keep their eczema as much under control as possible so that they never do.

Dealing with severe eczema outbreaks is a very tough battle that sometimes can affect the whole entire family, as was in our case.  In some cases, it can be a difficult fight, as it was for my brother, but for the most part it can be kept under control.  For our family, monitoring our children’s skin daily and using natural based creams has been very helpful in preventing major outbreaks and keeping the eczema under control.  Good luck to everyone else battling!

Malvina Beker - Start with MomBio: Malvina Beker is a teacher, an author, a sociologist and a mom. She has a Masters degree in Sociology, a Bachelor of Education, and a background in child psychology and development. She has taught high school Family Studies, Parenting and Music courses, and has research experience through interviewing as well as surveys. She is a mother of two little girls that inspire her the most, and is always excited to share and exchange opinions and experiences with others.  She is also the founder of Start With Mom www.startwithmom.com, an online resource/directory for moms seeking solutions to healthy living. You can follow Start With Mom on FaceBook, Twitter, and Pinterest.

Announcing a Breakthrough in Eczema Treatment: Chicago Integrative Eczema Center

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

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

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.

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

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

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

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)

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.

Follow

Get every new post delivered to your Inbox.

Join 7,223 other followers

%d bloggers like this: