In December of 2014, we went to Vinnie's allergist, desperate for help. His skin was out of control. He appeared to have developed several new allergies through the Thanksgiving holidays. He was getting sick constantly. Unfortunately, his allergist, the Head of the Department of Allergy/Immunology at Children's Hospital of the King's Daughters, was just as baffled as we were. She said at this point she isn't sure what else to do for Vinnie or how to help him, but she did have a little glimmer of hope. She told me about a program in Denver, at National Jewish Health Center, where they treat kids with severe atopic dermatitis (the fancy name for eczema) and allergies.
That's where we began our journey to Denver. It took the doctor about a month to get the referral in, due to holidays, weather, and other set-backs. But, after she did, the process moved pretty quickly.
Within 2 weeks we got the call going over the details and doing the initial "intake" over the phone.
While Vinnie was in the hospital for a stomach virus, at Valentine's we did the processing paperwork and officially decided to go to Denver.
A few days later we got the call to finalize the financial aspects of the trip. We had to assure them that we understood the costs associated with their program. We will max out Vinnie's deductibles on this trip and come close to meeting our family deductibles as well. We will be responsible for paying all of that, via a payment plan over an 18 month period when we get home.
A couple days later we got the "scheduling call". We took a couple days to go over things and choose the best time for us to go and then called our coordinator up to make things official. I booked our flights while I was on the phone with her.
Now I have lots of paperwork to take care of, I've been making lists of questions and goals, and rallying support.
Today I got links to blogs/facebook pages of other families who have been to the program.
April 2012: http://www.realfoodallergyfree.com/overcoming-eczema/
May 2012: http://livinginanallergicworld.blogspot.com/search?updated-max=2012-05-08T23:37:00-06:00&max-results=7&reverse-paginate=true
August 2013: https://zoeynjh.wordpress.com/2013/08/08/day-one-njh/
September 2013: https://www.facebook.com/groups/672685026094819/
October 2013: http://jonahlowry.com/
February 2014: https://www.facebook.com/pages/Caleb-Goes-to-Denver/1431419120425855
(This child's AD was labeled as "moderate/severe" and he got to go home a day early!)
February 2014: https://answersforava.wordpress.com/
(This child's skin responded well to the therapy but she was only able to do ONE food challenge in all 10 days. The doctor's did offer to keep her longer.)
I'll be reading their stories and adding to my list of questions/goals/concerns. Vinnie starts the program on April 13, and hopefully I'll be diligent in blogging our way through it.
1. Get his skin healed.
2. Confirm/deny his allergens and plan a good diet
3. Answers about his immunology & why he's always sick
4. Answers about his size/slow growth
1. What should we bring?
2. Are there meds/lotions we can buy before we go?
3. Bathing distractions?
4. Medicines to take/not take?
This is the original post in this series.
Post 2--thoughts & questions is here.
Part 3--More prep work
Compilation of Questions to Ask Before/In Denver
Plans for Things to Do