One year after NJH

We started our journey to National Jewish Health one year ago. I look through the pictures from the blog and I can’t believe how painful her skin looks. She wasn’t what we considered “flared” back then, when we went to Denver, but I would call that our worst day if I saw it today.

Zoey August 2014

Adjusting to the new routines and incorporating it into our day schedule has been challenging, but life is a lot easier these days. Aside the itching and burning she experienced when her skin was in terrible shape, we never noticed how anxious and unregulated her emotions were. We assumed it was a prolonged terrible two’s. We assumed it was a behavior problem we could only fault ourselves for. Gradually, after returning, we saw our daughter transform into a confident, calmer, thoughtful version of her old self. I attribute this in part to the clinical social worker who worked with Zoey, but also to the absence of pain she must have felt on her skin for so many years. Who could possibly concentrate or calm down with something akin to 200 mosquito bites at full bloom? When she comes into contact with an allergen or irritant, she asks for a washcloth before she attacks herself. She doesn’t immediately start itching. She understands if she scratches, it will cause more itching and take more baths for every scratch. Again, thanks to NJH clinical social worker Jennifer Darr.

hands 2014, no band-aids!

We haven’t wet wrapped in quite a while. We rarely need to use topical steroid medication. Zoey’s asthma has calmed to the point of potentially not needing her preventative daily inhaler. We forget to give her a daily antihistamine Allegra and aren’t always sure we have a bottle of Benadryl around. One year ago we were giving her Benadryl 1-2 times a day, in addition to a daily antihistamine and still, she scratched.  Eczema is chronic and allergies are allergies no matter how great her skin barrier is. We still see reactions, but not quite as visible and immediate on the skin as they used to be.

Food Allergies: Twice this year Zoey mistakenly ingested cow’s milk and went into anaphylaxis. Zoey sensed something was wrong well before the itching, hives, swelling and extreme difficulty breathing ever started. These events were very scary and shook us to the core, but in hindsight I think each experience is worth quite a bit.

I feel more confident administering an epi-pen. Zoey is now familiar with symptoms of a serious allergic reaction and hopefully that experience will serve her well if and when they occur again.

Annual blood test results showed her total IgE went from 490 to barely 80. Every single allergen specific IgE has gone down to such an extent that if we see this trend next year, we might be hopeful.  Numbers mean nothing of course, but we never saw numbers go down until this year. Only exponentially to terrifying heights, year after year. Sesame is low enough for a food challenge. Peanut and all tree nut numbers halved, as did milk, egg and wheat. Not ready for challenges, but hopefully soon.

Below I’ve pasted information on National Jewish Health in case anyone needs help getting started. I’m always happy to answer any questions about my experience there, and wish all the eczema parents in the world the best of luck.  And sound sleep.

National Jewish Health Pediatric Day Program

Eczema Parents Facebook Group

 Some recent news on a study of wet wraps:

Wet wraps cut need for drugs in kids with eczema

Ponies don’t make us itch!

 

 

Advertisements

4 responses to “One year after NJH

  1. Thank you sooooo much for sharing Zoey’s experiences at NJH. My son is 5 and he has the same allergies and eczema like Zoey. it touched my heart while I am reading through your blog. Seems so hopeless and helpless at first but I can finally see a way out for my boy. He loves playing with his friends at school but I will have to remind him not to touch this or that, wash your hands, wearing long sleeves on a hot sunny day to avoid possible allergens, scratching nonstop days and nights….

    I have contacted NJH for this wet wrap treatment as well and awaiting for the insurance approval. Not sure what do I need to bring to Denver during our stay for the treatment and that will be great if you can share your experiences with us.

    Thank you so much!!!

    Love,
    Liz

    • Thank you Liz, your comments mean the world to me. The sole purpose of this blog is to help other eczema parents get an idea of what worked for us, and what the program at National Jewish Health is all about. I know what you mean about having to remind your kid to do what most adults would have difficulty (myself included) with! I still have to remind Zoey about those things, but the difference is in the nights, and picking her up at school in the same shape I left her that morning. I’ll email you tonight and answer any questions you have, but in the meantime, I wish you a scratch free night.

  2. Hi, just wanted to say you’re amazing and have so much strength to support Zoey through her difficult eczema time. Not sure if you still check the blog, but wondering if I could ask you a few questions about NJH? would appreciate a reply if you do 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s