The First Saturday in May

 

If you are new here, you can find all of the posts in our Overcoming Eczema, Food Allergies and Night Terrors series here to get caught up!

Where I live, the first Saturday in May is one of the most celebrated days of the year.  Weeks before the big day, the town comes alive with grandiose displays of fireworks, hot air balloon races, steamboat races, parades, marathons, concerts and parties galore.  Celebrities fly in from all over the world to watch the “the greatest two minutes in sports.”   As the daughter of a horse trainer, I know all about chasing The Kentucky Derby dream, but the Kentucky Derby is not why I will celebrate this weekend.

 

It was the first Saturday in May 2012 that I got to bring my 5 year old baby girl home from a two week hospital stay in Denver.   As we anxiously walked off the plane to reunite with her Dad, brother and two sisters, I took her little hand in mine.  For the first time in her life, her hand was soft and smooth.  I choked back the tears as I remembered the last time we were in this airport.


Just two weeks earlier, we sat waiting to board the plane to Denver.  Bella was crying from the overwhelming and constant itching she felt especially on her hands that day.  She rubbed her hands back and forth as hard as she could on the coarse fabric of the airport chair.  Her hands were raw and bleeding as tears flowed down her cheeks. When it was time to board the plane, I reached for her tender hand, and she pulled back in pain.

 

Bella was just 6 weeks old when the angry, hot and itchy rash appeared covering her body from head to toe. The itching was so bad that she would scratch uncontrollably, causing open wounds all over her body. The itching would wake her up several times per night.  Her lack of sleep triggered night terrors that lasted for hours.  All of her pajamas and bed sheets were covered in blood stains.  Her suffering broke our hearts.

 

After years of prayer and research, I stumbled upon the two week outpatient Atopic Dermatitis program at National Jewish Health.  Through the power of wet wrap therapy and intensive allergy and nutritional testing they have given us our life back.

 

They did not cure her eczema, but they got it under control. They taught us how to maintain her new skin and what to do when there is a flare up.  There have been many random setbacks, but none of them put us back to where we were a year ago.  Thanks to National Jewish, we have been able to get all of the flare ups under control within a day or two.

 

With healthy skin, we were able to find her true triggers and allergens. It turns out that she only needs to completely avoid nuts and limit fresh dairy.  After years of eliminating the top 8 allergens (egg, dairy, wheat, soy, tree nuts, peanuts, fish and shellfish) this has drastically opened up her diet.

 

I can’t describe the freedom we are feeling. I am no longer obsessed by food.  I no longer worry that there won’t be anything safe for her to eat at the next meal.  I no longer worry when she rolls in the grass with the dog.  I no longer worry when her brother buries her under the fall leaves.  I no longer worry about the sting when she jumps into a swimming pool or ocean water.  I no longer worry that I will fall asleep while driving.  We are all sleeping for the first time in 5 years!

 

So this weekend while the rest of my town is celebrating a horse race, my family is celebrating answered prayer. We are celebrating freedom.  We are celebrating life.

 

You can read more about our story of overcoming eczema, night terrors and food allergies here.

 

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39 Responses to “The First Saturday in May”

  1. Laurie says:

    I can’t believe it’s been a year since you all went! Love this post :)

  2. Grace S. says:

    It’s been a year already? Is that your sweet little girl in the picture? It makes me glad to see her so happy and looking so beautiful. What a difficult (to say the least) journey you’ve had! Celebrating ‘with’ you.

  3. Amy says:

    Praise God for your freedom! I understand those worries that you are talking about, i am living that right now. All of my children have peanut allergies, and my youngest is similar to your baby girl. Allergic to “everything”, skin flare ups, wheezing…etc.. It’s a trial for sure and we are also praying for that freedom. :-)
    Thanks for sharing your journey!
    love,
    amy

  4. Nicole Sherwood says:

    How wonderful! Thank you for sharing. Our 6 month old son has severe eczema as well. He saw a new Dr. yesterday at Children’s Hospital in Denver, who recommended a stronger steroid ointment and twice daily antihistamines for 2 weeks. This after trying many many natural products which he proved reactive/overly sensitive to. But I have been worried, honestly. Worried that I did not make the right choice and that he will continue to suffer with the medicines (wish I could use something “natural” and not chemically derived. What types of things did National Jewish suggest for flare ups? I suspect my son is intolerant to corn, as he gets a rash when I use a skin cream like Vanicream which includes a corn derivitive. The dermatologist at Children’s dismissed this idea. I am so encouraged that you are a natural food advocate and still had success with conventional medical treatment!

    • Nancy says:

      If you are near Denver, PLEASE go to NJH. I’m telling you, they get it! They know what they are doing. We can use natural products like coconut oil to help maintain healthy skin, but we have to use conventional medicine for flares. The great thing about NJH is that while they use conventional meds, they help you ultimately use less. The head of the program is not a dermatologist but an immunologist. That is why they are concerned with the whole child and not the skin only. You can read a daily journal of our NJH stay here: http://www.realfoodallergyfree.com/overcoming-eczema/

    • We have gotten rid of our son’s severe eczema and I would urge you to not use steroids! Cerave, Dermasilk Garments (you can buy them online from Canada), and a Kangen water machine helped us (you spray low PH water on skin, and they drink high PH water). We are now almost 2 years eczema free, and just saying the word eczema literally overtakes my body and brain with the stress we endured. Cerave Cream on the body and Cerave PM on the face numerous times a day is a great start, ceramides in Cerave I believe are the key.

  5. Penny Lane says:

    This post made me cry. Both with sadness of thinking of a child in pain and with joy that you have all found answers and healing. Thank you so much for sharing your story!

  6. Tory says:

    So wonderful!! Haven’t read through all the days of your stay but so awesome that your little girl was helped so much by the doctors in Denver!!!

  7. vani says:

    Hi Nancy,
    This post made me so happy today and gave courage to battle eczema which my one year old suffering. You write so well… really encouraging. May God continue to bless you with all the happiness you deserve. A big hug mama..

    • Nancy says:

      Thank you Vani! Let me know if I can help you. I am part of a wonderful support group on Facebook called eczema parents. I’d love for you to join us.

  8. Lisa says:

    Thank you for this incredible story of your experience at National Jewish. My son, who is about to turn 2, suffers from eczema and food allergies. After a year or more of diagnosis and treatments that only help a little for a short amount of time, we are waiting our NJ scheduling call. We hope to get in by the end of summer. Your story gives me hope when I really need it. Thank you so much!

  9. Philip says:

    This really made me tear up, because I know that there are so many people who need this type of therapy, like me when I was 13, or your daughter when she was 5, and who cannot get it. I was at the point where I would take 14-30 day rounds of antibiotics and need another round about a week later. Thanks to great parents like you and my folks, and the wonderful staff an NJ.

    • Nancy says:

      Thank you so much for commenting Philip! NJH is a wonderful place. I find myself on support groups begging parents to do whatever it takes to get there. I’m so glad you were able to go, but I’m sorry it wasn’t until you were 13. May I ask how old you are now?

  10. Philip says:

    I am currently 14, went there the day after memorial day, 2012. Since they were closed on the holiday, I only spent 9 days there.

    I had had flares before, but in the summer of 2011, I got my most severe flare up yet. We were able to reduce it a little bit, but we were never able to get it to go away. My Mother had gone through a 1 week program for a respiratory illness, and so we learned about NJH with that, so we checked in about February on scheduling, and we got one after school was out.

    Again, thanks to you for sharing your story.

  11. Gaby G says:

    Read all your posts. Thank you for sharing. Your last post brought tears to my eyes.

  12. amber says:

    Hi Nancy,

    I was thinking about you and your daughter a few weeks ago as I was making some of my homemade lotion for my son’s skin (that is now almost completely healed from his infancy and toddler eczema). I was thinking about your story- I remember it so well because you wrote about your struggle so eloquently and it was so real…and also heartbreaking. I kept up on your first few days at the center…then summer came and things got busy. I’m just now reading this update (I can’t believe it’s been a year) and I have to say, I’m overjoyed that your daughter is not only better and the eczema is under control, but that her life is now so different in so many ways. Her ability to eat more variety of foods, the sleeping, the smiles. I am just so happy for you- all of you. You’re an amazing mother for helping your sweet girl and getting to the root cause of her condition. The center sounds awesome and I say congratulations to you all in this new happy chapter of your life. I can only imagine how precious it all is for you!

    Hugs,
    –Amber

    • Nancy says:

      Hi Amber,

      Sorry I’m so slow getting back to you. I am so happy your son is almost over his eczema. Thank you for your sweet note. Bella developed a cold which caused a major flare up. It’s fascinating how the immune system works. We have come a very long way and I am extremely grateful. I am also looking forward to complete healing.

      Blessings,
      Nancy

  13. Tara says:

    Hi Nancy,
    Thank you so much for sharing your story, it brought me to tears. So happy that your daughter’s eczema is being controlled.
    My little girl just turned 1 and we have been struggling with eczema since she was 4 months old. She was just allergy tested and I am hoping that cutting some of the triggers out of her diet will help. I have enjoyed your website and I am looking forward to making many of the recipes.

    • Nancy says:

      Hi Tara,

      Thank you for the sweet note! I hope that diet changes are the answer for your little girl. Many, many people see huge results by eliminating dairy alone.

      -Nancy

  14. Lauren vdH says:

    Can you explain what you mean by fresh dairy, does that include cheese. My son has been intolerant to dairy, and is jut starting to be okay with cooked butter, milk, fresh yogurt, but has a real problem with choc chip cookies….I’m little confused. He is only 2.5 yrs old o it could have been something else that was bothering him. Thanks

    • Nancy says:

      Lauren,

      Basically cooking the milk slightly alters the protein. The longer you cook it and the hotter you cook it causes more change. So for our food challenges, we started with a muffin containing milk that had baked for a significant number of time. After she tolerated that, we gave her pizza. So, the milk had been cooked some when it was made into cheese and then baked again on the pizza. When we passed that challenge she was given a cheese stick. Sometimes she has a delayed reaction to cheese; sometimes she doesn’t. She almost always has a reaction to milk, ice cream and yogurt. Does that answer your question?

  15. Mandy says:

    I just found your site and wanted to thank you for sharing your eczema battles and victories with the world. I found it so encouraging reading through everything today! My 10mo baby has battled severe eczema for the past nine months. We’ve tried everything, and over the past month have seen a miraculous breakthrough! I have a great, supportive family, but have lost a bunch of “friends” through this process. Battling something like this can be very isolating. People don’t seem to have compassion unless they have dealt with something similar. So thank you for sharing hope with your readers! Thank you for sharing pictures, especially! You have greatly blessed me today! <3 Mandy

  16. Annie says:

    Thank you so much for your blog. My son has been battling but it not as severe as your Bella. Omitting dairy from my diet has helped curb his reflux and eczema. I have found they are often connected.

  17. Sarah says:

    It is amazing to hear someone with a success story from such a terrible disease. After reading your blog, I’ve contacted NJH and an anxiously awaiting my nurse phone call next week. Our current derm wants to put my 2.5 yr old on an immunosuppressant for several months and this just doesn’t sit well with me. I know it may help for the time being but the side effects are what scare me. Did Bella ever try those? Specifically cyclosporin? Thank you for your detailed journaling. I pray that this is the answer for us!

    • Nancy says:

      Hi Sarah,

      Our pediatrician referred us to a doctor for cyclosporin as a last resort but I didn’t go. You won’t need it if you get to NJH. I am so thrilled you are planning to go. It will change your life!

  18. Maxine says:

    I am in tears after reading this as my daughters storey is very similar apart from the night terrors it gives me hope that we might be able to get it better under control ,so glad your daughter is improving x

  19. D.Cates says:

    Hi, enjoyed reading Bella’s journey of battling severe eczema & finally with positive results. I am 64years old & have had eczema since my early 20′s but the last 2 yrs have been the worse. This might sound like a trivial question,but may I ask which soaps for her skin,her clothes,hair have you found to be gentle enuf for her skin but also effective in the cleansing department? I’ve tried making homemade detergent & haven’t found any recipes that aren’t harsh. Thanking you in advance for any solutions you might be able to share.

    • Nancy says:

      Hi D. Cates,

      The team at National Jewish teaches that if you get the skin barrier healthy, you won’t be so sensitive to those things. I have found that to be true for Bella. I used to use only Tropical Traditions Coconut Oil soap. I am telling you it is the best! I kept a bar in my purse. We used it as shampoo and hand soap. For laundry detergent, I made my own with Borax, Washing Soda and Fels Naptha. Sometimes I just used washing soda. For cleaning house, I only used vinegar. I have recently discovered Norwex cleaning clothes and love them. You don not use chemicals at all with them. I hope that helps! You really should try wet wrapping if you haven’t already.

      Nancy

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