Child Diabetes Management: Emotional Challenges, Protege Trial, Online Tools

Beth McNamara Health Guide
  • My son and I arrived late in the afternoon yesterday at the Children With Diabetes Friends for Life Conference, which runs June 8 through June 12 at Walt Disney's Coronado Springs Resort in Orlando, Florida. We were not sure what to expect, but ready to take it all in.

     

    After a dinner buffet that was a diabetic's dream -- every food offering, from the chicken wings to the chocolate-covered strawberries, were labeled with the number of carbohydrates they contained -- we checked out the much touted Exhibition Hall. Since we had two very different agendas on the exhibition floor, with me wanting to absorb as much information about anything diabetes and my thirteen-year-old son searching for fun, we decided to part ways.

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    I was not disappointed with the breadth of what I found. I wandered from booth to booth, discovering new resources I didn't know were available, hearing about up-and-coming technology, and seeing what's on the horizon for diabetes management and prevention. There was so much to see that I barely made it to half of the exhibitors' booths when the doors to the Hall closed for the evening.

     

    I staggered out of the Hall, bleary from information overload and stooped from carrying the mountains of free giveaways (which I still don't know how I'll get on the airplane home). Although I hope to visit every booth by week's end, I do want to tell you of the finds that I found particularly intriguing.

     

    First off, for those families that have been recently diagnosed, and even for those who are well into the "D" experience, the American Diabetes Association was distributing a kit called Everyday Wisdom. This kit offers resources for families to manage the emotional challenges accompanying a Type 1 diagnosis, challenges that often go without being addressed.  Included is an interactive card game, similar to a Cranium card game, which can be played with most family members and weaves in diabetes-related questions and discussions into play. A DVD, diabetes dictionary and parent's guide also are included.

     

    Offering promise were the Protégé studies, which are clinical trials of the medication Teplizumab. These trials, presented by MacroGenics, target the very-recently diagnosed, specifically those people whose symptoms have been presented themselves in the last twelve weeks. These trials are determining if Teplizumab will inhibit, or slow, the destruction of the beta cells, and also are evaluating how long this process takes. Those interested can find out more at www.ProtegeDiabetes.org, and must work with their doctor to participate.

     

    Another resource of note was MyCareConnect, an online diabetes management tool that allows parents and other caregivers to stay continually updated of their child's condition throughout the day while the child is at school or camp. During the day, the child, a teacher, or school nurse can upload data about BG levels or insulin taken either directly online or by cell phone into the tool's well-structured log. Messages about these readings then can be sent to caregivers by text or email, giving real-time updates.  The tool was developed in 2004 by Pam Henry, a parent of a diabetic, who then worked in conjunction with the Children's Medical Center at Dallas to further refine the offering. It is currently available at no charge.

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    The Global Diabetes Handprint project, supported by OneTouch, encouraged attendees to write the one word that described what diabetes meant to them. Once I determined my word, I then wrote it on my hand and had my hand photographed by a OneTouch representative and the picture was uploaded online with a collage of other pictures. For my contribution, OneTouch donated $5 towards the diabetes charity of my choosing (OneTouch had two pre-selected). My word? Overcome.

     

    Lastly, my sweetest find was the stumbling upon the SweetLeaf booth, which was displaying liquid stevia. This no calorie, no carb sweetener also has a zero-glycemic index, and comes in fourteen different flavors ranging from hazelnut to root beer. The free samples of this stuff saved my sanity later in the evening as a I trekked back and forth and back and forth the nearly three-fourths of a mile between the convention center and my room (which I measured with the pedometer given by CWD) in order to find a wifi connection in order to post this. Parched and cranky from the miles of walking I had done with little luck finding an easy-to-access connection, I sweetened myself up with several glasses of the iced water flavored with berry liquid stevia.

     

    If you're reading this, I have been successful in finding and making my wifi connection in the Magic Kingdom. Let's hope my luck holds out on Thursday when I head to the conference's education programming.

     

Published On: July 09, 2009