Day 7 ( Thursday)

Zoey had a long night of discomfort and itching, I am assuming from the delayed reactions to the baked milk (which technically doesn’t happen). It could be from the first night without wraps on her face. Whatever it was , I was really dissapointed when she woke up a bit flared on her face.
Still, nothing else is problematic and I haven’t seen her hands look this great in over a year. It’s amazing because they are only covered up at night. We have 20+ pairs of gloves at home that we would rotate 24/7, and she’s had nothing on in the daytime since Sunday.
I was a bit more relieved after talking with the nurses and reassured this was normal after the first complete clear up, that the skin will continue to flare slightly upon contact with stressors ( like food challenges) until the many layers are in good condition. Apparently all that great progress I saw was maybe 3 layers deep, and eczema effects skin right to the bottom 20th layer, which will take time. Dr. Leung said it can take up to a year of maintenance to get the skin healthy enough to be a barrier to allergens and not react upon contact. We can continue to wet wrap as needed, and will make sure she is getting the 20 minute bath each day and “soak and seal” with moisturizer.
He thinks she is responding so well to treatment that he’s happy to officially discharge her Friday unless we want to try for baked milk in a blind placebo on Monday, and the most potentially reactive pistachio on Tuesday. I am opting his referral to a UNC colleague to continue the 2 food challenges next month, and we’re going home on Saturday. He’s hoping to see us get into the oral immunotherapy studies there in the coming years.

I signed Zoey in the playroom and met with the clinical social worker Jennifer about care plans for daycare and beyond. This plan combines clear descriptions of her food allergies, asthma and eczema, and simple and appropriate actions for each. Before NJH I had a billion different directions for each condition and it was confusing even for myself. I am not doing justice to the immense teaching and care plans I’ve received so far from all parts of the team.

I went to a group meeting for parents, which I wish I had more opportunities to attend.
Meeting the other eczema parents is like seeing your sisters again and speaking in your native tongue.

These are just a few of the eczema parents I’ve been so lucky to meet here at National Jewish Health. Our kids vary in allergic conditions related to eczema. Some are dealing with severe GI conditions, infections and others with growth problems despite pristine diets only a dietitian could dream up, asthma, food and environmental allergies, EOE, total IG E levels well above any Level I could have imagined. Our children are here for treatment and diagnosis of many conditions.
We are happiest with the successful treatment of the relentless itch.

We don’t eat we’ll enough and we can hear scratching from 2 rooms away. We are really excited that our kids are sleeping better already since NJH. We are united in our priority to treat our children’s eczema above all other things because it takes the greatest toll on our children and families.
Tomorrow we’ll meet with the dietitian about all those chicken nuggets;)


2 responses to “Day 7 ( Thursday)

  1. Wow. What powerful words. Things I feel overjoyed at hearing are the care plans for daycare! How helpful! That you connected with other parents who truly understand; the power of community! That you have a pathway to journey ahead now; the contact in nc and follow up plans for healing down to the 20th layer and food trials as time moves on. Lastly that you and zoey are homebound Saturday!!! It’s been an intense and emotional journey that you’ve gained so much from.

  2. This has certainly been a journey for you, Garland and Zoey. You’re coming back with a wealth of knowledge, a plan of care, empowerment and a connection to a whole community! Thanks for bringing all of us along for the ride. Journey on….. Love you.

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