Why we are going to National Jewish Health

Packing

This is our staging area, all the things I plan to pack for Denver. As you can see, most of it is food. Whatever clothes don’t fit will be left behind.  Food items are non-negotiable item when you are dealing with life threatening food allergies to egg, dairy, wheat,peanut, sesame and tree nuts (walnut, almond, pistachio…)
At least, we’ve been told by “the best” allergists and immunologists out of Duke University that Z’s consistently high blood and and skin prick tests
for those allergens puts her in life threatening danger if even a minute amount enters her system.

Which one is the most dangerous? Well, theoretically they all can be. We’ve seen anaphylaxis to either milk or egg, and multiple reactions of varying severity to milk and wheat. We’ve wondered about cross-contamination in seemingly safe foods over the years.  We strictly avoid all of these allergens as advised by our allergists and haven’t seen a really strong reaction to food in several years.

But…

At face value, yes we are going to gain control and better manage Z’s severe eczema. However, part of the motivation lies in finding out if Z is actually allergic to all of those food items, and if we truly need to restrict her diet, as well as our wallet, time and sanity.

When Z was 6 months old we had struggled with severe eczema for at least 4 months. Duke Dermatology was of little help.

check out those cheeks. Big and cute, but scarred from itching.

check out those cheeks. Big and cute, but scarred from itching.

Desperate, and reading somewhere that food allergies can cause eczema flares,we went to our first allergist at 7 months old in hopes that we might be able to pinpoint the offending allergen and remove it, and resolve Z’s severe skin issues. I was expecting cat, and gave evil glances over to Schmampbell the cat in the days leading up to our appointment.
I was in shock and disbelief when Z’s scratch test came back very positive for egg, cow’s milk, almond and peanut. (I wasn’t shocked about the allergy to le chat noir), and negative for dust (who is not allergic to dust??), negative for mold,bee stings etc.

Well, I removed the cat but Z never had any of the offending foods. She was pretty much on pureed fruit and veggies. So we avoided those foods and the eczema remained. We locked on to this food-causing-eczema theory because as she moved on to her first and second years, she did have clear allergic reactions to milk and wheat.

Allergic reactions don’t look like eczema though. They are swift and scary. Smallpox. Giant swelling limbs where there are no limbs. Projectile vomiting.

I just assumed the allergist was right about all of her allergies, and that I wasn’t doing a good enough job avoiding all traces of allergens on furniture, cooking utensils, tables, people and toys and that the eczema was one big contact allergy.  I imagined how scary ingestion of those things might look.

The gold standard for any food-allergy diagnosis is a food challenge.
National Jewish Health believes in food challenges, and performs them when there is even a slight question about an allergy.

A food challenge is where they feed a small amount of the suspected allergen in a clinical setting (where they can treat anaphylaxis which happens often during these), increasing the amount over a few hours and observe for the next 8 hrs.
If they react, they call it an allergy. If nothing happens within 8 hours, the child is clear to eat the allergen.
This is very dangerous to do without a doctor’s supervision and many parents, grandparents and caregivers have taken it upon themselves to “test” the diagnosis with dangerous, and sometimes deadly results. It’s very safe in a clinical setting, as they are prepared and expecting to deal with anaphylaxis.

This gold standard for diagnosis is very expensive, but very safe in a clinical setting. We’ve never been offered a food challenge for Z.

The Duke doctors reasoned that since we tested her annually for suspected allergens, it was too much of a risk because numbers always came back higher than the previous year, and stayed in the highest range of antibody levels. Her skin prick tests showed comparable results.

Here is a story about a little boy who went on a feeding tube because of this misdiagnosis.  National Jewish Health probably saved his sweet little life:

And an explanation by a doctor at NJH describing how a food challenge works:

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4 responses to “Why we are going to National Jewish Health

  1. Thank you for this, will be reading everyday, and you two will be thought of more on your trip than I usually think of you!!!!

  2. From your favorite “mother in law ” to my sweet and wonderful Daughter in law—God be with you and our sweet ZOEY on your trip–we pray that this trip will change all of our days ahead—I too live with eczema–(since radiation for breast cancer )It is so painful—if you can please call us —and HAPPY BIRTHDAY Monday—we will see you Monday after we leave Duke–WE LOVE YOU–Mary Alice

  3. Steph, I am so glad that you able to put this experience into words. It’s a wonderful reflection on your journey and gives us all a glimpse into the world that you, Garland and Zoey live. I’m looking forward to following along each day and reading about your trip (and seeing more cute photos!). I know that the National Jewish Center will provide you with much needed control over the allergies and eczema. Love you guys and thinking of you everyday.

  4. Happy Birthday Stephanie. Best of luck on your adventure with Zoey over the next couple weeks, I have a candle lit for you and my thoughts and prayers always. I will be looking for your progress notes and I will celebrate the good outcomes expected from this trip

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