Doctor's Note

CC-2012  Photo by The Doctr

The next time you meet with your child's endocrinologist you may want to remember to ask her for a note. Here are three reasons that have recently made it necessary for our teen:

1.) DMV- Having a chronic illness makes you jump through a few extra hoops at the Division of Motor Vehicles. In order to get a driver's license or permit, many states require a doctor's note indicating that the applicant is in good health. Some states have specific forms that you need filled out, and the doctor's signature is required.

2.) TSA- Although it's not mandatory, we've found it helpful to have a doctor's note for the airport security personnel. You should separate out your insulin and diabetes supplies for quick inspection and explanation. More and more Transport Security  Administration (TSA) agents are learning what insulin pumps look like, but Amy over at DiabetesMine gives a great overview of what you can do to make traveling with diabetes easier.

3.) SAT- It's hard to concentrate or even see clearly when your blood sugar is overly low or overly high. The stress of taking the Scholastic Aptitude Test (SAT) is just one more factor that can make a teenager with diabetes have crazy blood sugar levels. Fortunately, you can arrange for your child to take an untimed test so that she can check and treat her diabetes. It doesn't mean you get easier questions, but it levels out the playing field. A doctor's note is needed to get this special dispensation though.

Twitter to the Rescue

I love the Internet. It's been invaluable to me for researching diabetes matters. As we begin the process of shopping for a new insulin pump, I immediately turned to the web. Online, I could easily surf and scan manufacturer's websites and read customer reviews.

Like most people though, I tend to trust the opinion of people I know rather than take the word of a stranger. Social networking lets me lob questions like this to people I know and trust. I've been able to get great feedback from my friends at Juvenation, Facebook and Twitter.

Last week I publicly posted my pump question on Twitter. Almost instantly, I got a gem of an idea from one of my twitter followers, @jenjanofsky.

Here's what she suggested: contact your manufacturer reps. This way you can get a one on one, personalized pitch from someone who has in depth knowledge of what their pump could do.

Thanks Twitterverse!

Risky Teens

The Beautifully Blossoming McFeeley Sisters

GUEST POST: Meet Pat McFeeley, one of the coolest dads with daddybetes and a dear friend. His twins are both Cassie's age and they have all grown up together being able to share their diabetes travails. Now as teenagers, our daughters are hitting us with ever changing challenges. Pat was kind enough to share a little insight that we may find useful.

I am the father of three amazing teenage daughters, including twin 15 year olds who have generally done a wonderful job of managing their Type I Diabetes.   Recently, I have been baffled by their “distractability”, the likelihood of not following through on what I would think would be automatic activities like testing blood sugars and delivering insulin (not a word but hopefully you get the point).  For a T1D the teenage years can be the most challenging,  often times HbA1C numbers become inflated to lifetime highs.  With all of the hormone changes that are taking place and growth spurts, the body can struggle to deal with blood sugars, not to mention the distractions of being a 15 year old year old young lady.  Lets face it sometimes Facebooking , Tweeting  or texting a friend, about the hot boy in their class, takes priority over taking insulin for a meal or a high blood sugar.

The general thought is that teenagers don’t appreciate the consequences of risky choices they make.  A good friend from JDRF, Tom Brobson, recently recommended an article that sheds some light on the teenage brain in regards to risk vs. reward.

Apparently, the teen brain does comprehend the consequences but values the reward much more than the adult mind.   As a teenage T1D, that might mean continuing that important conversation or activity with a friend rather than checking your blood sugar or delivering important insulin. It could also mean driving a car unaware of a low blood sugar.

The article is in the Oct. 2011 issue of National Geographic Magazine.  It is worth a read for any parent trying to figure out the teenage brain and how they make decisions.  It also discusses some interesting facts about the development of the brain during those years.

 Here's the link: http://ngm.nationalgeographic.com/print/2011/10/teenage-brains/dobbs-text

Crowdsourcing Cures

I have a lot of faith in the diabetes community to be able to drive cures and better therapies. In fact I wrote a guest piece for fellow blogger Amy Tenderich at Diabetesmine about crowdsourcing a cure.

Smart pharmas like Sanofi are embracing this concept. Although the company does good business making drugs like Apidra and Lantus today, they realize that the diabetes community can be a great source of input and ideas for the next generation of diabetes treatments and tools for tomorrow.

Sanofi is now running an innovation challenge to healthcare providers, patients, IT professionals, students and organizations interested in combining data and design to create a human-centered and data-inspired innovation around diabetes. They've put their money where their mouth is, and are putting up a $100,000 grand prize to some undiscovered innovator(s) who can help people with diabetes (and those of us who love and care for them).

But the first step is to hear from US, the online diabetes community, to determine what type of innovation is most important for patients. Sanofi understands the power of listening to the people who use their pharmaceuticals. Now's your chance to tell them what you need.

Here's the link to the diabetes innovation challenge (http://www.datadesigndiabetes.com/) . Hurry! You only have until this Sunday to be heard.

Valentines Jewelry for my Diabetes Girls

You can take the road most traveled this Valentine's Day and simply get your sweetheart chocolate or flowers. Flowers trump chocolate as a gift for people with diabetes. After all, who wants to wait until a low blood sugar to have a truffle? But what trumps them both is sparkly, sparkly jewelry.

As a Daddybetes daddy, I love to spoil my girls. This year I offered Marinda and Cassie their choice of any of the chic bracelets at Lauren's Hope for Valentine's. The catch? Lauren makes medical ID bracelets.

Both my wife and daughter stubbornly (foolishly?) refuse to wear a diabetes identifier. This makes it pretty problematic since they are both currently on a shot/syringe regimen rather than a pump. It's hard to tell that you have diabetes just by looking at you. So I'm hoping they pick out something nice from Lauren's jewelry line. This jewelry could help save their lives. I can't think of a better way to let them know how much I love them.

Disclosure: I'm not paid to write about any of the things I've endorsed on this blog. Also, you may want to know that Lauren's Hope donates a portion of their profits to JDRF (where I serve as a Board member- though I don't get paid for that either).

Hate is a Side Effect

On juvenation Abigail told the world that she's sick of diabetes. Her exact words were:

I HATE DIABETES!!! im tierd(sp) of my shots and i freak out when i see that shot and every time i have to get the shot i say i hate my life !

Abigail is seven years old. She was diagnosed last November.

After dealing with T1D for over 15 years (since Cassie's diagnosis), I can honestly say that I am sick of diabetes too. I Hate it with a capital H.

Unfortunately, hating it doesn't make it go away. Denying you have it just leads to bad glucose control and potential health complications down the road.

It's useless to want to be just like everyone else. Chuck Eichten who has had diabetes for over 30 years may have described this feeling the best. In his new book, The Book of Better: Life with Diabetes Can't Be Perfect. Make It Better, Chuck likened having diabetes to being freakishly good looking. Even on a day when you don't feel so attractive, or don't want any attention, people still stop and stare in awe at your gorgeous-ness. You just can't get away from people wanting to be near you, and they can't help but point and scream OMIGOD about your extraordinary good looks. It's your burden. You've got to accept it and face it. Wanting it gone or hating it doesn't do anything productive.

Although it's already February, when diabetes is concerned, it's never too late to work on those New Year's Resolutions. You can either resolve to let Hate lead to denial, or you can resolve to have Hate push you to not let diabetes win.

Diagnosis Deja Vu

Last Saturday, I delivered a research update at a JDRF Family Retreat in Greensboro. The event has grown exponentially and the executive director of our local JDRF chapter told me that we had over 800(!) people attend. The sprawling Grandover Resort was abuzz with families who were learning from healthcare professionals, attending lectures and connecting with others "T1 families." Parents had binders full of info and product brochures under their arms. Children were chasing each other throughout the halls - laughing in glee - some meeting other T1D kids for the very first time. What made it so special was that siblings and family members without the disease were just as much a part of the action as those with diabetes. Moms and Daddybetics like me could all bond and commiserate together.

The audience for my speech was made of newly diagnosed families. The expansive ballroom was packed with moms, dads, grandparents and kids who wanted to hear what kind of science JDRF has been finding to get us closer to a cure and better therapeutics (like the artificial pancreas). They were hungry for news. They were hungry for hope.

As I met with a few of the attendees after my speech, I could see a reflection of myself in them. It brought me sharply back to a point in time near Cassie's diagnosis - a time where I was simultaneously overwhelmed with information yet eager for more data.

I could almost literally feel their emotions course through their hands into mine as I took their hands. These raw emotions of fear, confusion and sadness rushed through me. It was a vivid, deja vu-like experience that left me physically spent for the rest of the weekend. Seeing where they were - only a few months into a life changing diagnosis - took me back to the same dark, dark place where I had once been. The experience rekindled my resolve to keep pushing for a cure even more.

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.