World Diabetes Day -- November 14th

November 14, 9:51 PMNY Special Needs Kids ExaminerLeslie O'Donnell

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World Diabetes Day -- introduced in 1991 by the International Diabetes Federation (IDF) and the World Health Organization (WHO) in response to the alarming rise in diabetes around the world -- is celebrated every November 14th, engaging millions of people worldwide in diabetes advocacy and awareness.  It's all over the media, it's all over notable landmarks....even celebrities are getting into it.  Governor of California and former Hollywood strongman Arnold Schwarzenegger issued a supportive proclamation, stressing awareness of simple lifestyle changes as relevant to prevention.  Nick Jonas of The Jonas Brothers supported the WDD campaign with a radio message last year and a Tweet this year.  In all honesty, I didn't get to leave my house today, and I don't pay all that much attention to celebrities, but what with having a father who developed obesity-triggered Type 2 Diabetes, a father-in-law who was prediabetic, several friends dealing with both Type 1 and Type 2 Diabetes, and after having come very close to developing Gestational Diabetes while pregnant with my son, the campaign hardly needed strategically placed blue lights, or celebrities, to get my attention.

But wait...Diabetes is just that condition where you can't eat sugary stuff, right?  Yeaaahhhhnnnno....it's not that simple.  While both Type 1 and Type 2 Diabetes relate to blood-sugar levels, the conditions, as well as their treatment, are rather different.  Even Type 2 Diabetes -- that one "where you can't eat sugary stuff" -- isn't that simple, even when it comes to diet (though thankfully there are many resources to help with meal planning). But really, it's worth learning about Diabetes in more detail than I can go into here, so I recommend starting with something like the previously included links, or the website of the American Diabetes Association (ADA).  What I'd like to do now is share with you a more personal perspective.

Jeremy is sixteen years old.  He's a bright, sweet kid, with a shyer version of his mother's personality but funny-man conversational reflexes, and you can quickly see why, despite adolescence-and-then-some reasons for angst, he's an attractive prospect for friends and, oh yes -- we can't forget -- the girlfriend.  He also has Type 1 Diabetes.  He was willing enough to humor his mom's crazy friend and agreed to let me interview him, but we ran into a problem....he couldn't really think of answers to any of my questions.  Offered an anonymous soapbox, the most he could work up was a wish (easily applied to far more than issues of growing up with diabetes) that people would listen more.  Partially, the issue was that having a soapbox to stand on doesn't mean much, when you're still inside the box.  Having been diagnosed at the age of ten, Jeremy can't remember NOT being diabetic.  He isn't sure what would be of value to say to those not living with the condition, because he has no perspective on what that kind of existence, and its mindset, might be.  "That's just it!" he says, "I've got a disease, I live with it..."

So he does.  He's had an insulin pump (which still draws questions at school) for five years now, after dealing with shots to inject the insulin, the first year.  Despite that, to maintain his health, he must test his blood sugar a minimum or 4 times a day, but more typically 6-10 times a day.  He pricks a finger with a lancet, then collects a drop of blood that goes into a strip in his glucose meter.  Unfortunately, puberty plays hell with blood sugar -- growth hormone tends to counter insulin, so in recent years, his blood sugar has been way out of control.  He has medical procedures filled out by his doctor for school which require him to come home if his blood sugar is over 400 or if he has moderate ketones.  He's missed approximately 20-25 days this school year so far.  Think about that....most kids don't have that many absences in a year, unless they are their teachers' and guidance counselor's worst nightmare, and Jeremy has already missed that many, just between September and November.  His absences are not always resolved as easily (haha) as getting his blood levels under control, either.  Simple illnesses can be very hard on him, because of his diabetes; for example, stomach viruses can get out of control very quickly, resulting in diabetic ketoacidosis.  He's been hospitalized twice because of a stomach virus.  "It makes it hard to succeed in school," says his mom, "Plus it's hard to make friends and stay friends when you miss so much."  How does Jeremy feel about that?  "I don't really care.  I guess I've been afraid to go out with people to events and stuff, on the rare event that I DO go low or something.  On the rare event that I do go out..."  Maybe it's the personal connection, but I couldn't bear to watch the young man's defenses go up and crumble, go up and crumble any more, so I let him off the hook.  And, while he tried to apologize for being a "sucky" interview subject, I feel he did share some important perspective on being a child with Diabetes.  Most people, if they have something in their life that stands out as an injustice, well, they'll rather easily vent about it.  But if something is and/or feels like an inherent and pervasive part of the whole of their life in general, it's a lot harder to boil it down to a statement, a description, a message.  Diabetes isn't always just something you have, something you take care of and that's that, you get on with your life.  Sometimes diabetes, especially for a child like Jeremy, is life.

Jeremy's mother, Renee, had more to say:

"Most kids get diagnosed because they eat lots of candy for Halloween, or at a birthday party, and go into a coma....so they get that time in-hospital to learn how to use the blood glucose meter, to learn how to give shots, to learn how to eat.  Jeremy got diagnosed after being in the hospital over Christmas week with an appendectomy that went wrong -- there was a lot of bladder trauma.  The general practitioner we saw should have sent him to the endo immediately, if not referred him to the emergency room, but he was sent home.  When he started having problems with getting up during the night to pee 4 or 5 times, we knew there was something going on, but we didn't know if it was the bladder trauma or what.  We've since found out that the doctor could have killed Jeremy with that protocol, but we didn't know better at the time.  In any case, because of how the diagnosis came about, we didn't get counseling or training while still in a controlled, monitored environment.  We got a 3 hour seminar and a book on carbs.  We were mailed a blood glucose meter and told to check his blood sugar every day.  That was it -- we were on our own for the rest."

What does she regret the most about her son's diagnosis?  What does she find the hardest part?  To both questions, Renee answers, "That he's missed out on having a 'normal' life.  He's had to grow up so fast, and be responsible, and it feels like he's missed so much.  I mean, I sort of feel like it's really hard to pick a single hardest part, a biggest regret.  It's all hard... it's life.  And I really wish I could make it go away, but... *shrug*  The fact that it exists is the bad part, and they need to find a cure."  I asked her if she had a message for parents or teachers of diabetic children.  "Try and remember that they are more than their blood glucose.  There's more to them than meter readings and blood sugar checks and carb counts..."  And also, perhaps, that those physical elements are more than just physical elements...that they affect behavior and mood, etc., even when the child is able to be present?  "Yes- very much so!" she responds, "When his blood sugar is high, he can be cranky, combative, disoriented.  When his blood sugar is low, he can be disoriented and....crap, can't find the word...but they become clumsy and their brain just isn't working right when their blood sugar is low.  So if they're acting out, check blood sugar.  ...And try and remember they're dealing with so much more than they should have to deal with."