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Tuesday, November, 10, 2009
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Cool Finds from the Children With Diabetes Conference

Beth McNamara
Beth McNamara
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Son living with Type 1 diabetes

I am the mother of three sons, Rob (13), Jeremy (11), and Duncan (7)....

Beth McNamara

Thursday, July 09, 2009
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Top 10 Things to Do After Your Child's Diagnosis

Read Dr. Cogen's informative guide on what to do!

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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.

 

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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