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.
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.