Sunday, January 31, 2010

Sleepover Perfect

Snowflakes visited the Carolinas Friday night and our entire neighborhood was beset with giddy childhood wonder at the sight. Plans were quickly made for sledding and snowman building and all the kids were planning sleepovers. It's fun to hunker down at a slumber party during a white out, and this is something we didn't want to rob Cassie of because of her diabetes.

Friday night was easy. We had two of her friends spend the night at a sleepover at our house. We could still do a late night blood sugar check and keep an eye on what she was eating. Saturday was a different story. She was "camping out" at a friend's living room with another gaggle of girlfriends. There was no way to guarantee the same kind of precise diabetes control when she wasn't under our own roof.

The desire to have "perfect" blood sugars is a strong one. But sometimes, as parents of children with diabetes, we have to redefine "perfect" and "acceptable." It's the only way to get good balance between emotional and physical health, and the only way to keep from spoiling the magic of a snow day.

Thursday, January 28, 2010

The Clock

When will there be a cure? This question is usually the first one that pops up right after diagnosis. Actually the question keeps arising. After every doctor's visit. After every fund raiser. After every major research announcement.

When will there be a cure?

Trying to answer this question is a trap for counselors and health care providers. There's been a lot of advancement in therapeutics (stuff that makes the day to day treatment of diabetes better) as well as advancement in our basic understanding of how diabetes starts and works. This promising progress leads to crystal ball proclamations like- "we'll have a cure in 10 years," or "you won't have to worry about this by the time your daughter's a teenager." The intent is to inject hope, but putting a date on things can mislead and cause serious disappointment. Decades later, initial hope fades into bitterness or disillusionment.

The right questions to ask are:
"How can we get a cure faster?"
"What progress are we making towards a cure?"
"What can we do in the meantime to stay healthy?"

We can and will get a cure. Exactly when is a mystery. My guess is that it will happen at 10:47 a.m. I'm not committing to the date.

It's a waste of energy to speculate when. We should just push to make sure we're making forward progress towards finding a cure.

Thursday, January 21, 2010

Gold Medal Glucose Control

Next month in Vancouver 29-year-old, Kris Freeman will remind everyone that type-1 diabetes does not have to stand in the way of Olympic glory. He is a three-time Olympian, and the second most successful American cross-country skier of all time. Kris is currently slated to compete in five(!) events in the 2010 Winter Games: the 15 km freestyle, the individual sprint, the 30 km pursuit, the team sprint, and the 50 km mass start classic. Good thing he's got an omnipod strapped on so that his ski poles don't get tangled up in tubing.

I hope lots of kids with type-1 cheer Kris on and get inspired to go for the gold despite of their disease.

Wednesday, January 20, 2010

Late Night Check

It's 1:44 A.M. and I'm checking Cassie's blood sugar again in the middle of the night as I have more than a thousand times before. It's been a long day for me and it's hard to get up yet again. I should be tired, but what's at stake is worth it. I could never tire of her smile. I could never tire of her hugs.

Am I tired? No, not at all.

Thursday, January 14, 2010

Local Change: ZiptheCure

Monica's zip code is 15243. She's confident she can raise $100 for diabetes research from everyone she knows in her own zip code. But here's the brilliant realization Monica had: if a 15 year old like her could accomplish this simple thing, why couldn't someone in every zip code do it too? This is the cool idea behind her website ZipTheCure.com She's created an online fundraising tool to allow each US zip code to commit $100 towards finding a cure for diabetes.

If Monica gets full participation from every zip code, she'll raise around $4 Million for JDRF... and she'll do it $100 at a time, one zip code at a time. It's easy. It's simple. It's important.

I just sponsored my zip code today. And I did it without any stamps.

Wednesday, January 13, 2010

Artificial Pancreas News

This morning JDRF announced that it will be working together with Animas, a Johnson & Johnson company, and Dexcom to develop the first generation artificial pancreas. It marks a big step to have a major non-profit partnering with private industry to bring cutting edge JDRF research to patients worldwide.

By teaming with major pharmaceutical companies, the artificial pancreas will be able to effectively go through the clinical trials process, FDA approval and get quickly distributed in the marketplace to reach T1 patients who need the device.

The key point you should note is this: collaboration between industry, charities and volunteers is making cures and therapeutics happen. Only by working TOGETHER will we find a cure for type-1 diabetes.

Here are some details from the official JDRF press release that describe the Artificial Pancreas:
The first-generation system would be partially automated, utilizing an insulin pump connected wirelessly with a continuous glucose monitor (CGM). The CGM continuously reads glucose levels through a sensor with a hair-thin sensor wire inserted just below the skin, typically on the abdomen. The sensor would transmit those readings to the insulin pump, which delivers insulin through a small tube or patch on the body. The pump would house a sophisticated computer program that will address safety concerns during the day and night, by helping prevent hypoglycemia and extreme hyperglycemia. It would slow or stop insulin delivery if it detected blood sugar was going too low and would increase insulin delivery if blood sugar was too high. For example, the system would automatically discontinue insulin delivery to help prevent hypoglycemia, and then automatically resume insulin delivery based on a specific time interval (i.e., 2 hours) and/or glucose concentration. It will also automatically increase insulin delivery to reduce the amount of time spent in the hyperglycemic range and return to a pre-set basal rate once glucose concentrations have returned to acceptable levels.

In this early version of an automated diabetes management system, the patient would still need to manually instruct the pump to deliver insulin at times, (i.e. around meals). But this “hypoglycemia-hyperglycemia minimizer” system would represent a significant step forward in diabetes management, and could provide immediate benefits in terms of blood sugar control, by minimizing dangerous highs and lows.

You're invited

I learned this morning that the juvenation online community that I helped to start just surpassed 8,500 members. That means that the number of registered members at JUVENATION.ORG has grown by 20% over in just the last 3 months!

This is amazing; thousands of people are sharing their knowledge and support about Type 1 diabetes to anyone with an internet connection. Who's joining? There are parents of newly diagnosed children, teens and adults with type-1, and family members like me on the community who are all involved in a mash up conversation about daily life with diabetes.

If you haven't registered yet, consider this your formal invitation. We'd love to have you join us.

Tuesday, January 05, 2010

Fighting for CGM

My friend's daughter, Taylor just got a Dexcomm CGM (Continuous Glucose Monitor) for Christmas. It's weird to have something like that on Santa's list, but can you imagine what the real gift is? Taylor's overly pin pricked fingertips can take a rest; her subsequent hemoglobin A1C's will drop; her parents get an early warning alert if her blood sugars start to crash. She's happy as a lark.

Unfortunately, her parents' pocketbook suffered.

Even now, many insurance companies don't cover the CGM under their plans. The insurance companies don't have the patient's long term health in mind. They figure you'll switch carriers before they get the benefits of not having to pay for vascular damage or amputation which happen years down the road of bad control. Their short sightedness is your enemy. Badger them. Hound them. Get your doctor to pester them too. It works. Some of the community members at juvenation have come out victorious in this battle. It's worth the fight.

Monday, January 04, 2010

Diabetes Resolution #2

Marinda and I have seen alot and been through alot treating Cassie's diabetes from "babyhood" to "teenhood." We keep hearing from more and more parents with newly diagnosed children of varying ages. New Year's Resolution #2 is for us to do more on JUVENATION.org and this blog to help share our knowledge with them. It's a scary road when you first face this disease. We remember those terrifying feeling all too well. I'm resolving to reach out more to the newly diagnosed.

Diabetes New Years Resolution

The beginning of each year is a good time to look back on the past year's successes (and shortcomings) and resolve to make it better. In 2010 as a parent of a child with Type 1 diabetes, I'm making this my #1 resolution: Listen more to my daughter.

After all, she's a responsible teen now. Cassie is more in touch with her own disease these days than when her mom and I were trying to guide her through good control as a young girl. Most times, she can "tell" when her blood sugar's dropping better than our scheduled finger sticks could indicate. She's also administered insulin so many times for crazy foods like pizza and Mexican food that she can judge the right amount of insulin to give herself.

So hopefully now we can DISCUSS her care with her more rather than strictly dictate it. Cassie has been great at helping to take care of her own diabetes. She's earned the right to have a say, and I'm resolving to be a better listener.