Wednesday, November 09, 2005

Diabetes Awareness~Teenaged Noncompliance

November is Diabetes Awareness month. As such, my circle of Diabetes Bloggers (see right... most are identified as diabetes bloggers, or have things like Shots, Pancreas, etc. in the title of their blogs) have agreed to make November 9 a day in which they blog about Type 1 Diabetes. (Many thanks to Gina at Diabetes Talkfest for this inspired idea.)

What's your job? If diabetes affects your life in any way, and you maintain a blog, TODAY (WEDNESDAY) is the day to blog about that topic. Come on, everyone! Let's spread awareness using every tool we can... including the blogosphere! And if you don't have a blog and are just sailing through... or if you don't really know much about Type 1 Diabetes... your job is to join in the discussion! Comment, ask questions, add things... join in the discussion, even if you've never before commented on a blog! Let's talk this topic into the ground, shall we?

As many of you know, I'm a novelist whose 8-year-old son was diagnosed with Type 1 Diabetes just over a year ago. After numerous misdiagnoses, he presented in the Emergency Room near coma and was transferred via ambulance to UCSF, where he was in the PICU for two days and the pediatric ward for two. Since then our lives have changed forever. Many of you also know that as my work in progress, I am writing a novel which deals with Type 1 Diabetes as a topic. One of the issues included in the novel is teenaged noncompliance (with insulin regimens) and its consequences. I'd like to open this issue up for discussion among my fellow diabetes bloggers, my readers, and anyone who'd care to chime in!

I heard this tidbit via a friend in my diabetes circle and am quoting with permission.
When our A** was diagnosed at 20 months of age, over 7 years ago now, and we were worried about taking care of him at home, the Ped Endo (pediatric endocrinologist) assured us that we would do fine, and that he expected that A** would not need to be hospitalized again until he was a teen. At that point, he had at least a 50% chance of being hospitalized again. That ped endo, who had practicing for several years, pointed out to us that all the patients that he had in the hospital right then were either newly diagnosed or teenagers. He said that his experience was that 50% or more of the teen patients rebelled against their care and ended up being hospitalized. He also said that in his opinion it was a very split distribution. Very few teens fell in the middle as far as diabetes care goes; most were either very very good or very very bad. I wonder if any research has been done to confirm these numbers.
Folks with Type 1 Diabetes who were diagnosed as kids... is this true? Did this happen to you? Were you hospitalized and was it because of noncompliance? Did you have issues of noncompliance? How did you move past them?

I know Kerri once mentioned somewhere about girls she knew at the Clara Barton camp who'd deliberately miss insulin doses in order to lose weight, and I've heard that elsewhere, too. Andie Dominick also deals with that issue in her heartfelt and troubling memoir, Needles.

How common is this noncompliance business? Of course, I imagine those of you who cared enough to blog about diabetes would by necessity be of some statistical outlier... that you had been more conscientious than your average teen. (Hopefully our family are statistical outliers, too! A former "friend" once told me I was overly obsessed with diabetes... could our obsessions actually be GOOD things for our future teens? I hope so!)

And parents, friends, blogsurfers... any reactions?