Sunday, May 6, 2012

Up, Down & Hope too!

It's been a bit since I last wrote, I know. I apologize.

Over the past several months (beginning in December, roughly) Liv has had several setbacks with her Asthma, her allergies and her Eczema (Eczema, from this point forward will be referred to as Atopic Dermatitis or AD). She has missed several days of school and been sent home early from school far more than I am/was comfortable with. I was mainly getting calls about her skin though - I know it's hard for some to tell the difference between "allergy itchy" and "AD itchy" and really, that's why she was coming home. It was to the point that every Thursday or Friday I would expect the call to go and pick her up. I'd do our wet wrap routine for her skin over the weekend with an extra bath a day to help her heal...only for the end of the week to bring an early dismissal for her yet again. I put several calls in to her Dr at National Jewish Health and set up an appointment with Liv's fellow for more answers (hopefully).

We sat and the fellow heard my concerns loud and clear: Liv's excessive flare ups, her growing anxiety (e.g. refusing to walk anywhere near eggs in the store, dreaming about foods she is allergic too, having flare ups/Asthma issues before trips with her dad, etc....) and her seemingly increase in Asthma issues that I also had a fear were more on the side of panic attacks. Do six year old children have panic attacks? You bet they do and her fellow agreed they might be, "she has a lot to worry about," were his exact words. I don't know if I felt good that he was validating my fears and thoughts, or felt horrible that they could really be true - regardless, it was time to do something and move forward. He did the usual physical exam and started asking several "new" questions (at a certain point, you get so used to the questions, you know which is coming next) about her skin and more importantly her teeth. I have affectionately referred to Liv as my little "Shark Tooth" due to her grown up teeth coming in behind her baby teeth. Apparently this is a common symptom with an extremely rare disorder; Hyper IgE Syndrome. Between him and the Dr., they were only half concerned, but enough so to do the genetic testing. *Side note - They took the swab to her cheek and we waited 6 weeks or so (genetic testing is not a quick process, that's for sure!) to find out we did not have a future of chronic antibiotic use as well as a plethora of other scary health concerns - she tested negative. Thank the Lord!*

Her fellow also mentioned to me that he believed Liv to be a good candidate for the Pediatric Day Program there at National Jewish. This is an outpatient program of extremely intensive skin therapy and research to further diagnose and help their patients. After talking with him and the Dr. together, I agreed - this was definitely what was needed.

Five weeks later, we would begin the journey that is the Ped's Day Program at NJH.

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