Lotions and Potions

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On Friday before Labor Day weekend we woke up to inflamed cheeks. We chased this flare for a couple days with the wet washcloths, lotions and wet wraps.

I felt trapped in a pre-National Jewish Health frenzy, when she would clear up for an hour or so, then go right back to red, bumpy areas increasing in size with no apparent triggers. Fridays are “Daddy Days” when her father watches her while I work. She wasn’t in preschool and this was supposed to be the most eczema-friendly environment.

Why wasn’t our new approach working? Was it going to all go back to how it was before we went for treatment at NJH? My heart fell at the thought that we only gained a temporary solution.

By Sunday I was frantically paging through our care plan to see what I might have missed. It turns out that while I was diligently following the skin hydration, moisturizer, daily baths and even wet wraps, I completely abandoned the “step-down” instructions for the mild steroids in the last week. I was so thrilled to see the simple and “natural” measures of wetting and moisturizing working for the last few weeks that I never kept up with these directions which were clear and underlined in my care plan.
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Now we would end up having to move up to the “Moderate Atopic Dermatitis” portion of the plan and use Desonide, a stronger steroid before getting back into maintenance mode. This did the trick after about two days and we are back in “Mild” for a couple weeks, and hopefully onto Maintenance if we stick to the instructions.

I like this brief Q&A on topical steroid frequency and duration from the National Eczema Association.

Part of me is terrified that once we are stepped off of the mild steroid completely, that her eczema will kick back into gear completely. The logical part of me knows that there is a good reason for stepping down from steroids, and we saw what happens if we don’t taper down in the right order, and we need to use the topical steroid how they are intended.
The second trigger contributing to this recent flare was likely the lack of sunscreen last week during daycare.
I love that her preschool has the students outside for an hour each day. I was afraid to mess with any progress we’d made and didn’t apply the sunscreen.
Topical steroids + sun exposure is a recipe for a flare.
Though Zoey loves playing outside, she’s never been tolerant of warm temperatures. To make it worse, I dress her in long sleeves (lightweight cotton) which helps mitigate the effects of airborne allergens indoor and outdoors on her skin.

You just can’t win in the North Carolina summer.

Thankfully her daycare, Little Stepping Stones, is diligent about getting Zoey inside and cooled down when she turns beat red and feels uncomfortable. They cool her down with a wash cloth, change her clothes and re-moisturize.
She’s arrived home each hot day looking as clear as when she left NJH. While she eats with friends during lunch and snack, her teachers Ms. Joanne Ms. Alyssa work hard in the background with an eagle eye to observe the area is clear of allergens, sitting with students who are better than others at keeping their mess to a minimum, overseeing hand washing before and after and thoroughly scrubbing the tables.

This impossible task, happening pretty much all at once among 18 energetic kids is not an easy one but they do it somehow, singing throughout.

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7 responses to “Lotions and Potions

  1. So sorry your still dealing with the flare ups, but Fall will be here soon!! Totally Jealous of Aylissa sitting with her —still missing her like crazy!!

    • The flare ups are ok because 1. They are gone now:) 2. We know what triggered them, which was simply my mistake in adhering to a really simple plan for the steroids.(and no sunscreen) Now that we are following the plan, we’re still flare free! Yes…very much looking forward to the cooler weather!

  2. Good luck with everything, Stephanie.I’m reading this right now from my hotel room in Istanbul, and my heart goes it to you, Zoey and Garland for all the challenges you are facing with regards to getting it under control. Best wishes, and please know I’m thinking of you guys<3

    • …and I’m stalking your facebook page looking longingly at the gorgeous pictures of your first days in Istanbul. Especially the spice market.
      I need to go there someday.

  3. I have really enjoyed reading your experience at NJH. I have a 4.5 year old that has suffered from severe eczema since a few months old. We thought we had tried everything in the past, she doesn’t have any confirmed food/ environmental allergies which shocked the allergist. We recently met a wonderful person whose son went to NJ a few years ago so she has told us her experience and we are looking into going for our daughter. We had tried wet wraps in the past, but I don’t think we were doing them correctly. My question is what do/did you use when her skin was at its worst under the wet wraps? We have been on every steroid possible, protopic/ elidel, oral steroids, antibiotics etc. Thank you for sharing your experience it is helping parents like us that thought there was nothing else we could do for our kids’ ezcema.

    • Oh thank you Sonia-such kind words from another eczema parent!
      The most recent time when we were at our worst, we were at NJH and they prescribed very similar topical steroid types and strengths to what we’ve used (without success)in the past.
      Under wraps, the strongest was Triamcinolone Ointment, which we haven’t had to use since NJH, and then down to Desonide ointment, then maintenance with Fluticasone cream for a week following.
      Emollient lotion is pretty much just Vanicream (heavy cream with pump).
      The reason they worked while at NJH was because I was taught how, where, when and why to apply them. And it was reinforced over and over during my stay. Some of the new things learned..
      1. Applying large amounts on the flare areas (gobs) and no lotion or emollient over the steroid. The emollient or lotion would go everywhere the steroid was not. Sort of a paint by numbers.
      2. Always applied following a 20 minute warm SOAKING bath.
      3. At worst, following bath, steroid/emollient application with wet wraps.
      I will contact you with more specific things like the individualized care plan with directions on which ones to use when, but those were some of the really basic things that I somehow never quite understood.
      I wish you all the best as you consider NJH, and am thrilled to answer any more questions.

  4. Thank you so much! I am so thankful people have been willing to share their experiences as i had never come across NJH in my many eczema searches in the past or the numerous doctors we have gone too. Your response is incredibly helpful and yes we too have tried most of those steroids without much success. My daughter’s face flares up the same way as your precious Zoey’s so I will also send her to school with some washcloths and vanicream (awesome idea!) How old is Zoey? She is adorable and I know you must be ecstatic to see her with such clear skin and not suffering. My daughter, Violet, asked me a few weeks ago why none of her friends had boo boos like she does. It broke my heart as we have gotten so sick of the stares and people talking about her skin as if she wasn’t there. I really appreciate the advise.

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