After NJH-what happens?

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We’re home and anxious to find out if NJH really was the holy grail of emollient, and see if we can continue the healing with everything we’ve learned. Dr. Leung insisted I keep an eczema journal.
I was always curious what the days following treatment at NJH looked like for other parents.
How many flares post-NJH, how quick did they bounce back, how did contact with allergens, stress, infection effect their children’s eczema now that the 4th trigger, impaired skin barrier, was intact?
So I”ll keep this blog as chronic as the condition for a year, the amount of time the specialists at NJH said it might take to make Zoey’s skin less reactive to triggers, as long as we continue the treatment plan.
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I’ve been tempted to keep Zoey in a bubble to maintain the beautiful results from NJH, but I know we have to live in the real world of work, Tae Kwon Do class, daycare, relatives’ homes and all the associated triggers. We have care/action plans from NJH for each. We know what to do. OK! I’m back to work later this week, and next week the real test will begin.
Eczema parents, feel free to chime in and ask any questions, send tips along the way!

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10 responses to “After NJH-what happens?

  1. Yay, I was hoping you would keep this going!! I know this is important to you to help as many families you can by sharing your experiences. But selfishly, I can see pictures and know how she is doing at the same time. Zoey has always been a beautiful girl inside and now { and hopefully it continues} she will have that beautiful skin without scratching to go with it. XO XO

    • Oh you are so good Jen! Didn’t want to run it into the ground, but it’s kind of addictive;) and hoping it’s useful to anyone wondering if it will be just as good once you get back in your home environment. I’m wondering the same thing!

  2. Thanks for posting updates:) I wish I could suggest something, I know the fats in avocado and oils are helpful to me but I don’t have the allergies she does. Best of luck with this.

    • She’s not allergic to avocados! Ate ’em as a baby but won’t go near them now. Dietician suggested avocados as a the perfect source of nutrients so keep the suggestions coming! I still tend to want to hide foods like this in other foods ( avocado key lime pie, anyone?)dietician said to stop that:) but not sure how to get her near them.

  3. Welcome home!! So happy you are continuing to blog about this; Suzanne was just saying the other day how addicted she was reading your beautiful writing. I feel the same. It gives me such a deep awareness of what you and zoey and garland have journeyed through. We love u so much!

  4. I have been reading your blog as to gain knowledge about NJH and how they helped your daughter. Its so good to see her all comfortable and clear. I hope this continues.
    My son who is 14 months, has eczema. Though it has cleared a lot after figuring out his allergens but we still have some hot spots. Also I keep trying new foods and sometimes he reacts to them. I know what you mean by bubble, I wish I could keep my son clear but we have to try new foods and things.
    Appreciate your efforts in keeping us updated. Thank you very much.
    Good luck

    • Archana thank you! You are dealing with a really tough age when it comes to eczema. That strong will without reasoning part..so you are off to a great start with him being so young and getting some control. Wish we figured out more earlier in her life. Thanks for the support as we step out of that bubble!

  5. Hi Stephanie
    I am so happy for Zoey! I have followed your blog and am pretty sure we have spoken on the eczema parents board. We returned from NJ on May 1st. We still deal with flares on a regular basis. We are hopeful that they will calm down when the pollens that he is so allergic to subside but then there are the dust mites so who knows!

    The difference is that since returning from NJ we can keep the flares from getting out of control. They usually do not last for more than 2 days. My son still looks better now on his worst day than he did on his best days before NJ.

    We sleep now! No more scratches covering his body. No more constant skin infections.

    We are hopeful that as the skin continues to heal he will tolerate more.

    But it’s a lot of work as you now know!

    Wishing you the best of luck!!!
    Stephanie 🙂

    • Thank you for the encouragement Stephanie! It’s really important, and hard for me to remember that there will be setbacks, but that we will still remain in control. Thank you! And yes…the sleep is pretty sweet:)

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