Sweet 16

Early yesterday morning, after blowing out 16 candles on her birthday cake the night before, Cassie went through one of the most harrowing, stress-filled teen experiences- the dreaded road test at the DMV.

Three point turns and turn signals aren't my largest concerns. She's a very competent and safe driver. The daddybetic in me was more concerned about her driving with passable blood sugars. Hypoglycemia at 55 miles per hour is not a worry for parents of "normal" teens. If we could figure out how to hook up a blood glucose meter to the ignition, I would do it in a heartbeat. But her mom and I will just need to trust that she'll do the right thing every time she gets behind the wheel.

Driving off, Cassie beamed. Gauging her wide, wide smile I could relate to the emotions she had. I distinctly remember the feeling of driving unaccompanied for the first time at 16. It was a sense of liberation and elation I had never experienced before. I felt free. I felt light. The world seemed open to entirely new possibilities. It's probably the same feeling we would all have the day diabetes is cured. I hope Cassie gets this sweet feeling again soon.

Twitter Update

I've changed my @rpmax twitter handle to @daddybetes. Makes sense, no?

When I opened up a twitter account, I figured I would tweet like most people. I imagined passing along juicy news about Ashton and Demi, giving the world updates on my cat's hairballs and letting everyone know if I'm at a Starbucks near you.

Well, that's not what happened.

I don't have a cat. I rarely go to Starbucks (because I prefer indy coffee shops). And I don't really care about Ashton and Demi's private business.

What I DO care about is diabetes. News about promising research. Roadblocks from Washington. Stories of heroes in the diabetes online community (DOC). So what happened is that diabetes took over my twitter feed just as it had taken over my daughter's pancreas.

So I'm not fighting it. And it made sense to change the twitter account to coincide with my blog name. Thanks for following me.

The FDA is Listening

Our entire family has been collectively holding our breath, awaiting for action from the U.S. Food and Drug Administration (FDA). Last week, the FDA issued guidance for scientists and device manufacturers seeking approval for artificial pancreas technologies. It was a monumental shift in governmental policy that helps to flatten the regulatory hurdles that could hamper the delivery of groundbreaking treatments for my wife, daughter and anyone else suffering from Type 1 diabetes.

This outcome didn't happen without ALOT of regular, patient advocates rallying around the issue. Over 100,000 signed the artificial pancreas petition to urge the FDA and our Congressional representatives to ACT.

Jeffrey Brewer, whose son Sean has T1, is another"daddybetic." Coincidentally, Jeffrey also serves as CEO of JDRF received the news by saying that "the FDA has been responsive and listened to the recommendations of leading clinicians and researchers in the type 1 diabetes field."

Kudos to the FDA for listening and taking the time and resources to understand the hardships of the diabetes community. And equally big kudos to those of us who made our voices heard.

Advertising for Diabetes

Early this month, JDRF ran full page ads in The New York Times and the Washington Post. The NY Times has a circulation of 876,638 daily, the Post reaches an additional 545345. But the message was meant for the attention of only a handful of people - the leadership at FDA.

In coming weeks, policy for research and clinical trials of artificial pancreas technologies will be decided. It is critical that our government regulators understand the high stakes involved if progress is stalled. Every day, parents of children with diabetes like us struggle to maintain proper blood glucose control; every night my wife and I worry that too much administered insulin in our daughter's body may cause her to seize. We live on a razor's edge.

New technology could help. Auto-shutoff insulin pumps like the VEO could help, but we can't get it in the U.S. Clinical trials outside a hospital setting for an artificial pancreas are now being conducted in Europe- but not here. Why not? It's obvious for parents dealing with this disease that our kids are left in danger without these incremental improvements. The FDA apparently is unaware how precarious our day to day balancing act is. The ad's headline spells it out for them: 1 in 20 people with T1 will die from low blood sugars.

That's why lobbying for change, getting governmental support and even taking full page ads make sense. November is diabetes awareness month. The FDA needs to be made aware that their action or inaction has a direct effect things that we can't afford to wait for.

Ana and Sam

Lisa Hepner is a filmmaker who has a keen sense for showing people what it's like to parent a child with diabetes. Watching her short film (below), I couldn't help but think "I've been there" several times. It should be no surprise that she does a great job telling this story, because Lisa has been living with T1 herself for over a decade.



Her new documentary is going to chronicle one person's quest to research a diabetes cure. You can learn more about the Patient 13 project here.

Giving T1 the Finger

Happy T1 Day! Since November is Diabetes Awareness Month, we at JDRF have decided to make today (11-1-11) Type 1 Day. My buddy Scott McCormick had the brilliant idea of introducing giant, blue foam fingers to mark the occasion. So for all of us who deal with Type 1 Diabetes, we have a way to give diabetes the finger. We're #1!

Here's the JDRF video that talks all about Type 1 Day:



You can virtually give T1 the finger today by using this icon as your Twitter or Facebook avatar:

One small step

Over the next few weeks, we'll begin the process of turning our dining room table into JDRF Walk Central. That's when we start folding hundreds of letters, licking as many stamps and addressing every envelope to one of our dear friends and family. It all culminates when our friends and supporters join us on a walk-a-thon, as we do every autumn.

The response each year has been astounding to me. We get thousands of dollars in answer to our little letter...showing us how many people care about Cassie's and Marinda's diabetes. Every penny has a hope attached to it that it will bring us closer to a cure.

Earlier this year, the University of Pittsburgh Graduate School of Public Health unveiled a 30 year study showing that research and better treatments have resulted in something truly remarkable: the life expectancy of someone with type-1 diabetes has increased by 15 years.

It may not have led us to a cure yet, but every step has led us to one more day that we can spend with our loved ones touched by this disease.

No matter how you look at it, it's a step in the right direction.

5 O'Clock

I remember seeing this poster in Manhattan over twenty years ago and thinking how hilarious it was.

That was before kids. Having a child with diabetes sharpens the humor of this cartoon even more.

If it were only this simple. It's 5 o'clock somewhere... but not here.

Don't Mess with the Zofran

We are under siege. High blood sugars have decided to pull an all out assault on the Maxwell house, and we are in full defensive mode.

So we've pulled out all the stops: Zofran to keep her from vomiting, plenty of hydration with Low carb Gatorade G2; and TRIPLE the insulin we normally do. Despite everything we have done to get Cassie's numbers down, nothing has worked. It's so frustrating. It's worrisome. It's made us all lose alot of sleep.

Even our diabetes management tools seem to mock us. The glucometer does a funny thing. When Cassie's blood sugar is so high that it's literally off the scale, the LED display simply read 'HI.' There's no way to tell if her BG levels are trending down or up. It simply confirms what you know already - "HI, you're a whisker away from the Emergency Room."

But we won't stop. We can't stop.

There's no white flag from the besieged Castle Maxwell.

Twithead

Sometimes I come across interesting news and developments that are not quite blog-worthy. So I've been posting that stuff on twitter. What's funny, is that I think my diabetes twitter feed has more followers than my blog. Does that mean that "instant" is more important than "thoughtful?" Doubtful. I think we're all just desperate for cure news.

So if you want to follow me on twitter (@rpmax) instead of my blog, it's OK. It won't hurt my feelings. I'll keep doing both. Frankly, I'm just so thankful (and surprised) that people are paying attention to diabetes matters.