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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.

19 Comments Post a comment
  1. Ham #

    We do not have insurance and wondering how much a week of treatment will cost. Anyone can give me an idea please?

    Like

    October 3, 2013
    • Hi Ham –

      I’m not sure personally, as we haven’t been to the center. But, I know they are very flexible and will work with you. I’d suggest calling their nurse hotline and ask them this very question. Good luck to you! Jennifer

      Like

      October 4, 2013
  2. NJH was a blessing for us as well. All 3 of my children went. I wrote about our experience at http://www.lifegetsreal.co
    Thanks for sharing.

    Like

    August 30, 2013
    • Hi – We never went to NJH, but I remember calling their nurse’s hotline out of desperation – I was at my whit’s end, the very last eczema straw. From there, the only way to go was up and we ended up finding most my son’s triggers and finding some natural treatments that helped him quite a lot. I’ve heard such great things about NJH. I’m so happy they provided relief for your entire family. What a great place! Jennifer

      Like

      August 30, 2013
      • How do you call the nurses hotline? Is it safe to do these wet wraps at home before going there? We heard you have to be sure there is no infection or it can make it worse? Help!! We’re trying to get to NJH ASAP.

        Like

        January 8, 2014
      • Hi Matthew – I cannot remember how I reached a nurse and I went online and cannot find a number that looks like it goes directly to the atopic clinic. I’m sorry. I am not a doctor, so I cannot advise you to do the wet wrapping without medical supervision, but I can tell you we did it for several days ourselves. But I remind you not to do any wet wrapping with steroids or cortisone – it will amplify the effects and can be dangerous. Good luck at NJH. It’s a great program.

        Like

        January 13, 2014
  3. izzy #

    the biggest problem with eczema is the steroid creams prescribed
    steroid creams should not be used for more thans two weeks and not many people know this

    Like

    March 2, 2013
    • Yes, I can certainly see how the addictions to steroids can start if used long term. And steroid addiction is such a scary and difficult thing to go through from what I’ve seen and heard.

      Like

      March 6, 2013
    • Jane #

      My 10 yo son’s life long eczema (and sleep issues and flood peeing) was salicylate intolerance. Going on the FAILSAFE diet researched by dietician Anne Swain PhD of Royal Prince Alfred Hospital and popularized in Austria and NZ by Sue Dengate of the Fed Up books, eliminated all his symptoms.

      Then finally supplementing with high vitamin cod liver oil and high dose probiotics (D lactate free Custom Probiotics) enables him to eat a low dose of salicylate foods with a minimum of breakouts.

      Ultimately it seems like hypothyroidism is also a factor as Dr. Broda Barnes found that babies and children with eczema are actually low thyroid and NDT relieves it.

      Current mainstream medical views on thyroid blood tests and treatment – as well as unrecognized deficiencies in iodine, vit A, zinc and selenium which effect thyroid hormone production – are totally wrong.

      Like

      August 25, 2013
      • Jane #

        sorry Australia not Austria

        Like

        August 25, 2013
      • Hi Jane – Thanks so much for the info! I’ve never heard of the FAILSAFE diet. Would you like to write about your experience with it and how it helped your son? If so, please email me at jennifer@eczemacompany.com. Thanks! Jennifer

        Like

        August 27, 2013
  4. since reading this i have contact NJH and have our first phone interview next week. i am curious to how expensive it will be (and hope insurance covers some) but am grateful i have family who will pitch in if necessary. they all know we’ve been suffering now for 7 years.

    Like

    October 7, 2012
    • Shay – that’s WONDERFUL news! Good luck! I’m sure it will all work out for your family. I’ve heard such great life changing stories about that clinic. Wishing you a fantastic experience.
      Jennifer

      Like

      October 8, 2012
  5. So happy for you!

    Like

    September 18, 2012
  6. Kristie #

    Wow! I think your story will help many people. Just curious-were you given any advice on whether probiotics or any other supplements etc. were important?

    Like

    September 14, 2012
    • Hi Kristie – As far as I know the only thing they really look for is vitamin D deficiency. Apparently it’s pretty common in these kiddos. For what it’s worth Bella tested normal. We weren’t advised to take anything.

      Like

      September 17, 2012
  7. Sabrina #

    What an inspiration Bella is!!! Thanks for sharing your story.

    Like

    September 14, 2012
  8. A truly encouraging story for any parent of an eczema child, I’m so glad it turned out well for you but wish I had known about this 9 years ago

    Like

    September 10, 2012
  9. Wow! I wish I had known about this treatment back when my son was suffering with his eczema! He also had night terrors…it was awful! Luckily, they were not often…very out of the blue. They didn’t start until he was much older. Now that he is cleared…sleeping is not a problem…it has been replaced with the typical teenagers need for sleeping in! I am so happy for Bella and your family! Hopefully, your story will encourage those suffering to look into this program…I know I would!

    Like

    September 10, 2012

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