Daddybetes

Sweet 16

2011-12-21T13:35:00.004-05:00

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

2011-12-09T10:38:00.000-05:00

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

2011-12-07T10:40:00.000-05:00

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

2011-11-17T10:27:00.001-05:00

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

2011-11-16T11:48:00.000-05:00

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

2011-11-01T09:43:00.008-04:00

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

2011-09-27T20:11:00.003-04:00

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

2011-09-01T11:00:00.001-04:00

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

2011-08-16T16:36:00.001-04:00

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

2011-07-05T11:04:00.000-04:00

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.

Strong

2011-06-16T13:50:00.007-04:00

Kim over at the Texting My Pancreas blog has challenged the Diabetes Online Community (DOC) to create video clips for her "You Can Do This Project."

The very best submission is from Ginger Vieira. World Class Power Lifter. Blogger. PWD (person with diabetes). Daughter.

She tells us how her dad would continually coach her to A-I-O. Which means the following:
A= Adapt
I= Improvise
O= Overcome

Ginger is strong and full of resolve. It's pretty evident that she gets alot of it from her dad. It reminds me that this is an important role for a father of a kid with type 1 diabetes. We need to teach our children how to be tough. How to keep pushing on. How to overcome.

Not just strong. Daddy Strong.

Here's her cool video, which I hope you take 3 minutes to watch:

Bonus: If you have a daughter, be sure to check out this book, by Meg Meeker, Strong Fathers, Strong Daughters: 10 Secrets Every Father Should Know.

Three (and a Half) Cures

2011-06-15T12:15:00.010-04:00

I thought I wanted a cure for diabetes, but really I want more than 1 cure.

Cure #1: After Cassie was first diagnosed, I desperately longed for something to immediately shut down the autoimmune attack on her pancreas and keep her as a normal, healthy kid. I imagine it to be a magic pill that would stop diabetes dead in its tracks.

Cure #2: Now, Cassie needs something more. Now a cure for her would be like cure #1, but it would also regenerate new healthy, insulin producing beta cells. Also, it would reverse any damage and complications diabetes may have already wrought on her fragile body. I truly wish we had this kind of rewind button for anyone who is already living with this pernicious disease.

Cure #3: I worry about others who don't have diabetes but are predisposed to it. My older daughter who does not have type 1 diabetes falls into this category. Moreover, the number of new T1 diagnoses is rising at an alarming rate. We need a cure that prevents this disease from ever happening to anyone anymore.*

...and a half...Until we get to any of these cures, I'm hopeful that research can unearth some things to make managing diabetes easier. The insulin pump changed our lives. CGMs are magical and help people with hypoglycemic unawareness. A smarter insulin could ease mis-dosing. An artificial pancreas could be freeing. But these are all treatments in my mind- and not a cure. So I count treatments as a "half cure." But right now and right here, they are mightily important to me.

The folks at JDRF understand me. The organization is now focused on three things in the fight against type 1 diabetes: Cure, Treat, Prevent. Like most parents, I'm selfish for my children. I want it all. All three and a half cures.

*last week news broke about JDRF working with Selecta Biosciences for a type 1 diabetes vaccine. I hope they can get me cure #3, before grandchildren come into the picture.

Thanks Mom

2011-06-09T10:35:00.003-04:00

Amy S. Shneider was profiled in Boston.com for being a Joslin medalist. She has survived and thrived for decades, despite being diagnosed with T1 diabetes 50 years ago at the age of 5.

What does she credit her success to?

According to the article, excerpted below, the secret is us - parents of kids with diabetes.

...“It’s my mother who deserves the medal," Schneider said.

To test blood sugar back then, mothers had to boil something called Benedict’s solution and pour it into a test tube along with some of the child’s urine. If the solution turned a clear blue, that was good news; a milky orange or red meant that even with the insulin, the blood sugar was out of control.

Schneider said her mother also taught her to view diabetes as a fact of life, rather than an impediment.

“I had a family dynamic of ‘It happens, get through it,’" she said.

Although our kids may take all the nagging, haranguing and worrying as a pain in their butt, they all eventually come around to appreciating us like Amy has. You may just have to wait until they turn 55 though.

Pump-less for Exercise and Bikinis

2011-06-08T16:47:00.007-04:00

It's the sunny and hot season - which means that Cassie has switched to shots instead of the pump. Our kitchen is littered with used syringes and we're quickly filling up the gallon jug that we use to dispose all our "sharps" and needles.*

One reason she likes to be off the pump is because (say this in the voice of Isaac Mizrahi), "It simply ruins the lines of my summer wardrobe." To the mortifying chagrin of a teenager's father, this means bikinis and short-shorts.

But a another valid reason (and easier to swallow for a dad) is that the pump gets in the way of summer sports- tennis, swimming, etc. These activities usually required us to take off her pump for hours at a time. Her mother and I often wondered if we should pre-bolus for the insulin she'd miss from her basal or simply bolus after the exercise. We tried both ways with varying results and came to no conclusion.

Thankfully some real scientists have been trying to answer this same question.

A study done by Milan University revealed that the best glycemic control was achieved by keeping the pump active and on the child athlete then reducing the basal insulin rate by 20% for the two to four hours after exercise, if warranted.

According to a more recent pump study done in Stockholm, scientists found that athletes who did not have the pump on during activity were able to maintain a relatively "good" glycemic index after exercise. Pre-bolusing BEFORE the activity could potentially do more harm than good. The researchers found that if you had to take the pump off for exercise, they recommended "suspending the pump with 20% to 30% temporary basal added for the two to four hours after exercise."

The research was done on a relatively small group of kids - 15 to be exact - so your results may vary.

*It's a bit disheartening to see such a large receptacle nearly full, reminding us how many shots it takes daily for her to stay alive.

Parental Stress Survey

2011-05-27T16:10:00.003-04:00

Dr. William H. Polonsky, (Behavioral Diabetes Institute) and Nicole Johnson (PWD, former Miss America and dLife anchor) have teamed up to develop an online support tool for parents of teens with type 1 diabetes. To help them craft this program, they are reaching out to parents to learn what it's like to help manage this disease. You can take part in this Just for Parents Survey by completing a couple web questionnaires. They need our input by July, 1 so act fast!

Not our fault

2011-05-25T09:40:00.004-04:00

For the past couple weeks we've been battling high blood sugars at the Maxwell house. We've rejiggered the basal insulin amounts (Lantus), adjusted insulin to carb ratios, changed the time of injection for boluses. Nothing seemed to make a dent, and much self-blame was heaped on ourselves.

Then Marinda had a light bulb moment this morning.

Maybe, just maybe, the problem was the insulin we were using - not HOW we were using it. After all, we had switched suppliers to a new mail order prescription company.

Sometimes it's important to remember that the insulin is bad - not the decisions you make.

Embracing the Burden

2011-05-24T10:01:00.004-04:00

Last week I attended the JDRF Annual Conference and was elected to the 2012 International Board of Directors. It's a tremendous honor, and I see it as a chance to keep doing good for the Type-1 Diabetes community.

So what does being on the "big board" mean?

You may think we sit around dressed in tuxedos, smoking cigars in oak-paneled conference rooms. You may think that we get our kids and loved ones at the top of the list for any promising cures before anyone else does. You may think that we get to tell everyone what to do without lifting a finger. If so, you think wrong.

My outlook of being part of this august board means signing up for even more work, sacrificing time away from my family and taking on accountability for everyone who has donated as much as a single dime to the charity. Pat, who is a current board member, joked that one of the "perks" is that instead of walking the full course during one of our walk-a-thons is that we get to hoof an extra mile more.

Until now, my family and I have focused on raising money to support research and advocacy of this very personal cause. Now that I'm on the board, I get to spend that money - over $100 million of it every year. All my life, spending has been the easy part of the financial equation. In this case, it's not.

I know that I'll be spending nickels and quarters that little kids (like my daughters) have raised in lemonade stands. Every JDRF check stroked will draw on money that was raised through personal, humble pleas from desperate parents. Knowing this, I am burdened with the responsibility to ensure that the money goes to absolutely the best scientists and that not one cent is wasted.

It's a heavy burden indeed, but one that I gladly embrace on behalf of Cassie and Marinda. In fact, I'm incredibly grateful for it.

D'oh! Diabetes Bloopers

2011-05-11T10:30:00.002-04:00

This post is also part of D-Blog Week: Day Three's topic- Diabetes Bloopers

Grogginess and diabetes don't mix. Late one evening I hobbled upstairs to check Cassie's 2 a.m blood sugar like I usually do. I had forgotten that she was having a sleepover and the playroom was crowded with softly snoring girls. Luckily I tripped over Cassie who was wrapped up in a sleeping bag on the floor before I took the lancet to a non-diabetic finger!

Letter Writing Day: Dear Josh

2011-05-10T10:23:00.004-04:00

This post is also part of D-Blog Week: Day Two's topic- Letter Writing Day

Last night I got a very nice note from a rare individual. His name is Josh.
Josh is an adult with Type-1 diabetes. Diagnosed at the age of 9 he has lived with it for 20 years. But that's not what makes him rare.

Like many of us, he wants a cure for diabetes.
Like many of us, he wants a cure for cancer.
What makes him rare is this: he wants to actually DO something about it.

In his message he asked my advice about building something online so he could "step up and get a really big effort behind a cure." So here's an open letter back to him:

Dear Josh,

I'm excited to hear that you realize that just "wanting" is not enough, and that ACTION is needed to get us to a cure. Setting up websites to raise money for research is a great way to do it, but you should be sure to be creative about how you do it as Monica did.

You'll have to try lots of different stuff. Just go ahead and do it.

Also, don't be afraid to fail a lot. I've experienced a lot of unsuccessful online efforts for JDRF, but I tried lots of things so we could eventually come up with a few winners like juvenation.org.

I guarantee that you'll get disappointing results or get tripped up. Just keep getting up to do more - no matter how many times you stumble. You should be properly equipped for this, because that's the kind of perseverance you've needed to simply manage your daily blood sugars.

And I'll be here to help.

Good luck!

- Red

P.S. I hope anyone else who reads this letter gets off their keister to joins us in actually DOING something... Because the world needs more Joshes.

Admiring Our Differences

2011-05-09T10:57:00.002-04:00

This post is part of the Second Annual D-Blog Week led by the ever-inspiring Karen Graffeo.

I don't have diabetes.
My daughter does.

I don't know what it feels to be in the throes of an insulin reaction, groggy from high blood sugars or depressed from feeling like my disease will never be cured.

Frustrated on a night of high blood sugars, Cassie can get sharp and curt with her mother and me. It's easy to feel the barbs from my daughter's words when she cries out that I can't possibly know how she feels.

But I know how she SHOULD feel. Healthy. Unfettered. Unworried.

This drives me to be at her side when she needs me. It compels me to fight for government support for research. It strengthens me to put aside personal pride and ask family and friends for donations for research.

The gap between what is and what can be seems, somedays, like an insurmountable difference. But we both agree it's a gap worth closing.

I want to move to London

2011-04-15T15:45:00.006-04:00

My local forecast: Mostly sunny with a light breeze at a balmy 71 degrees. Our dogwoods, lilacs and fiery pink azaleas are in full bloom under an idyllic Carolina blue sky.

Yet... I'm a bit jealous of my friends in cold and foggy London. After all, they get better insulin pumps and drugs than us Americans. Ironically, many of them are made by American pharmaceutical companies. Really.

Case in point: Medtronic's Paradigm VEO has been available on the UK for around two years. This sweet, little pump has a built in CGM (continuous glucose monitor) and an auto shut off if your blood sugar drops too low. It's a step closer to an artificial pancreas. However, it's still not available in the U.S. and we may not ever see it. Why? 3 letters: F-D-A.

The FDA or Food and Drug Administration is in charge of protecting US citizens from bad and defective medical devices. Unfortunately, the agency is overworked and understaffed. And they're held hostage to antiquated processes. And they have a culture driven by fear.

The agency has an overarching philosophy: "better safe than sorry." Perhaps the FDA officers don't realize that T1 diabetics ALREADY live in a world of immense risk that easily justifies the fast adoption of innovative technologies like the VEO. The good doctors and scientists WANT to help us. They've fast tracked treatments before under the spectre of an AIDs epidemic.

I believe they need to adopt a similar mindset now... especially since Cellnovo will be introducing a nifty new iphone-like pump/cgm later this year... in London. Sigh.

Photo Credit: yisris on Flickr

TTFB

2011-04-06T15:01:00.007-04:00

OMG. All teens live to text, and type-1 teens are no exception to the rule. My friends Pat and Shauna routinely text their daughter with diabetes - "TNT" - shorthand for test and text me (your number).

In a recent edition of COUNTDOWN, Dr. William Tamborlane, M.D.,from the Yale Center for Clinical Investigation wrote impassioned and funny advice for teenagers like my daughter Cassie. His best point reminded me of Nike's slogan, "Just Do it:"

"If you use a pump—TTFB. Take the Freakin’ Bolus! That’s our motto and we have it emblazoned all over the new pump skin we provide our patients. Nothing is more important for managing your glucose levels with a pump or multiple daily injections."

It makes sense.

If you bought your teenager a Lamborghini, you could safely bet that she'd never keep it just sitting parked in the garage. She'd drive it until the wheels came off.

Why not the same thing with an insulin pump? It's an expensive and intricate piece of technology that kids with diabetes get to sport on their hip.

So listen up teens with T1: If you got it, USE it.

TTFB may be my new favorite thing to text my daughter!!

Photo Credit: Ken Banks, kiwanja.net

Community Support

2011-03-15T13:30:00.005-04:00

Online communities allow us to "help and be helped" across great geographic distances. Sites like Juvenation.org do this for the diabetes community, and there are countless other web communities out there to bring together people with almost every other disease. All too often I've heard from T1 kids who had never met anyone else with type-1 diabetes. Internet groups can help to close a geographic gap and create meaningful connections.

Sharing practical advice, moral support and patient tips go a long way - even if it comes in a pixelated form.

Jenni Prokopy who runs the chronicbabe.com blog put together a great video compilation that reveals how online health is being impacted by online support sites. It's worth checking out:

What is the impact of online health communities? from Jenni Prokopy on Vimeo.

Give Smart

2011-03-01T12:13:00.003-05:00

Saturday marked a big milestone for our little North Carolina chapter of JDRF. We raised $1.34 Million in one night for diabetes research. Once you have the money, however, a new problem arises - how do we best spend it?

JDRF prides itself in distributing the vast majority of every dollar raised directly to scientists who are searching for a cure, better treatments and ways to prevent the onset of diabetes. But how do we find the people who have the most promising lines of research? How do incent them to do what they promised to do in their grant proposals? How do we draw the best talent and minds to dedicate their time to solve our particular medical conundrum?

I met Ling last night at the 2011 TED Conference in Long Beach. As the "head honcho" of innovation at the Bill and Melinda Gates Foundation, she's seen first hand how the current system of grant making can sometimes destroy or pervert the innovators who apply for the support. Incentives disappear once the money is granted. Ling is trying to solve this puzzle (and promised to share it with me once she learns it).

Money alone can't cure diabetes. We need to be vigilant at how it's spent too.

Try Before You Buy

2011-02-23T12:47:00.003-05:00

Several years ago we were curious about the Omnipod as a replacement for Cassie's insulin pump. An all-in-one pump and infusion set that sticks to your body was a pretty compelling proposition- no more cords to worry about.

But making a switch requires a big financial gamble. Pumps are expensive and our insurance will allow us a new system only once every 4 years. That's a pretty big commitment. Thankfully the Insulet Corporation, who makes Omnipod had a free demo kit to try it out. We ended up not choosing the device (it felt too big* for little Cassie's arm, but the demo experience was invaluable.

I learned this week that Integrated Diabetes Services is now offering the same kind of trial service for continuous glucose monitors (CGMs). It's not free, but I feel it's cheaper than committing to a new piece of technology based solely on a corporate sales pitch. It's also neat that you can compare; they offer the Dexcom, Navigator, or Medtronic - all the major players. It's a neat way to try before you buy.

* Insulet previewed its new smaller omnipod at the recent 2011 JP Morgan Healthcare Conference in San Francisco. It's expected to be available to the public around 2012, pending FDA approval.