Untitled Giving Project: Insulin Pumps & CGMs for kids

It has long been my dream to find a way to give insulin pumps and continuous glucose monitors to children that need but can't afford them. Today after two years of research and preparation I am ready to take the first step towards making my dream a reality. 

I hope that you can imagine with me the collective good that would come from lifting just a part of the massive stress that managing a child's type I diabetes brings to a family. My family is lucky enough to have good insurance and the means to pay the out of pocket costs that are associated with these fantastic devices. I feel a grand desire to help the children that aren't as fortunate. I have a plan, an agreement to buy devices at cost and enough enthusiasm to lift my house, I just need one last thing... a little help. My goal is to identify and outfit the first child with a device by the spring of 2012. After that I'm going to keep going until I can't find another child suffering or struggling with multiple daily injections and wishing that they could use an insulin pump. I'm going to keep going until every parent has the peace of mind that comes from knowing that their child's CGM will wake them when blood glucose levels get dangerously low. Until type I is cured - I'm going to make these focuses my personal mission. I have the time, the knowledge, the desire and hope.

If I've ever helped, taught or inspired you please follow this link to find out how you can help me help others.

Continuous Glucose Monitoring Urged in Type 1 Diabetes

By Kristina Fiore, Staff Writer, MedPage Today

Published: October 14, 2011
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

Both pediatric and adult patients with type 1 diabetes should use continuous glucose monitoring (CGM) to measure blood glucose levels, according to new guidelines.

There's high-quality evidence from studies showing that CGM can reduce the risk of hypoglycemia and help maintain good glycated hemoglobin (HbA1c) control in both populations, David Klonoff, MD, of Mills-Peninsula Health Services in San Mateo, Calif., and colleagues reported in a clinical practice guideline from the Endocrine Society. The guideline was published in the October issue of the Journal of Clinical Endocrinology and Metabolism.

"There are still concerns about the high costs of CGM and the accuracy of the various systems available," Klonoff said in a statement. "However, the new guideline shows that CGM can be a beneficial tool to help maintain target levels of glycemia and limit the risk of hypoglycemia."

Standard blood glucose monitoring with finger sticks can provide only intermittent snapshots of glucose levels, the researchers said, and often miss sustained hyperglycemic and hypoglycemic excursions.

On the other hand, CGM allows for more complete blood glucose profiles, though there have been concerns over the accuracy of interstitial tissue sampling compared with actual blood levels. However, newer devices have shown improved accuracy, Klonoff and colleagues reported.

In their review of the literature for creating the guidelines, they found sufficient high-quality evidence to recommend the use of real-time CGM in children and adolescents with type 1 diabetes who are at least 8 years old.

There was also high-quality evidence to recommend CGM in adult type 1 diabetes patients, they wrote.

The guidelines also suggested intermittent use of CGM in both children and adults who can't use real-time CGM, in order to analyze nocturnal hypoglycemia, the "dawn phenomenon," and postprandial hyperglycemia. Intermittent use also can help manage hypoglycemic unawareness, as well as assist patients when significant changes are made to their diabetes regimens.

They noted, however, that this suggestion was made on the basis of low-quality evidence.

The guidelines also recommend against the use of CGM in the intensive care unit or in the operating room "until further studies provide sufficient evidence for its accuracy and safety in those settings."

Do you want to take that off

Arden’s school pictures arrived yesterday and I immediately noticed that she had her CGM on in the photo. I started a conversation about it so I could commend her but as it turns out, she doesn’t need my pat on the back... She told me that as she waited in line for her turn to smile she was asked if, she’d like to take her DexCom 7+ off for the photo. 

Arden declined!

If you look closely you can see that Arden wears her DexCom receiver in a Spibelt around her waist. She has many patterns and colors, on this day she was wearing a black pouch with multicolored peace signs.

I can’t tell you how proud I am of Arden for not wanting to hide her Continuous Glucose Monitor. Arden has diabetes and she doesn’t care who knows - so proud of her! Arden’s school pictures arrived yesterday and I immediately noticed that she had her CGM on in the photo. I started a conversation about it so I could commend her but as it turns out, she doesn’t need my pat on the back... She told me that as she waited in line for her turn to smile she was asked if, she’d like to take her DexCom 7+ off for the photo. 

Arden declined!

If you look closely you can see that Arden wears her DexCom receiver in a Spibelt around her waist. She has many patterns and colors, on this day she was wearing a black pouch with multicolored peace signs.

I can’t tell you how proud I am of Arden for not wanting to hide her Continuous Glucose Monitor. Arden has diabetes and she doesn’t care who knows - so proud of her!

Think about your DexCom

Have you every looked down at your DexCom and thought, “I wish this thing did ___________”.

Well I have and I wrote a blog about it. That blog post created a way for me to get my wishes into the back office at DexCom.

I wrote recently about an insulin switch that we made (Novolg to Apidra) and in that post I challenged myself and the reader to not become complacent with the ways and tools that we use to manage our children’s type I. I took my own advice and made an incremental advancement in Arden’s care and the results were totally worth the effort.

I don’t want to stop at that...  So in regards to the Dex, maybe we start with making some thoughtful suggestions to the good folks at DexCom about what features would assist us in taking better care of our kids (adults using Dex are welcome to join in as well).

Please leave your suggestions as a comment or send me an email.  I’ll compile everyones thoughts and get them into the right hands. Maybe together we can help ourselves instead of waiting and wishing and dreaming that someone will help us.

I hope you take a minute to lend your voice! Please know that your thoughts will definitely end up on the desk of the right person. Include your name and website (if you have) so that I can properly give credit to each of your ideas. 

**

The following are archived comments from this post. You can post new comments below.

Scott

Just got a great email full of ideas, keep them coming!

Friday, February 18, 2011 - 12:43 PM

Sarah

I would love to be able to adjust the pitch of the high and low alert. To me, it needs to be reversed because (in my opinion) a low is an immediate danger. Sometimes the alert as is sounds muffled and I don't always hear it. The high alert always gets my attention, if not scaring the pants off of me.

Also, I wish they had a screen to show average bg's like a meter does. 7, 14, 30 & 60 day averages. I hate having to plug it up and download just to know.

Friday, February 18, 2011 - 04:39 PM

Bennet

I think Dex and all other D devices should speak a common data language. That data belongs to the patient not the tech company and should be in standard formats that facilitate our care not their proprietary business model. It should speak with data analysis tools on the desk top or mobile device of our choosing and facilitate combining pump delivery info, meter info and wizard info entered into any device,

Saturday, February 19, 2011 - 12:25 PM

Nates Mom

I couldnt agree more with Sarah on the Low alerts.  My son Nate has had the Dexcom for three months, and I have a baby monitor sitting practically on top of it at night to ensure I can hear the vibrate and slight beep when he is going low.  I also cannot understand why it doesnt have a better range?  My company sells RF remotes that can signal through 3-storys... Dexcom only 5 feet?  An RF repeater addition would be nice...
Love it otherwise.  A little flakey at times, but cannot imagine life without it!

Tuesday, June 7, 2011 - 01:16 PM

I have a few thoughts

Dear DexCom makers,

At some point while I’m coming up my driveway my iPhone connects with my home Wi-Fi. At that moment I could stream content from my phone to any computer or television in my house. Pretty cool I say but you know what would be even cooler?

Being able to link Arden’s DexCom CGM to my wireless...

I’m just an idea man but please stick with me.  

If the transmitter and the receiver ‘spoke’ to my 

Wi-Fi. There would be no need to wear the receiver while inside. Not to mention no need to sleep with the receiver! Have you ever slept with a hunk of plastic next to you? Not fun.  

And the main reason to make this improvement. You could design and sell simple wireless base stations that would alert the house of blood glucose movement. This would be a fine revenue stream for you. Imagine, alarm clocks, wall clocks, base stations, that flash, beep or both. 

Your product is fantastic and in most controlled situations it’s perfect. However, it falls short when Arden leaves the room, the floor or goes to bed. At this point Arden has been wearing the Dex for so long that she sometimes doesn’t hear or feel it when it alerts her.

Imagine I’m in the kitchen making dinner while Arden is upstairs in her room, her blood glucose is falling and she either ignores, doesn’t feel it - whatever. Suddenly my wall clock gently changes color like a tastefully designed BatSignal or Ohhh yes, better yet the DexCom app on my iPhone sends me a push notification.  Doesn’t that sound nice?

Here is a real world situation that happens all of the time.  I, many times don’t hear the Dex beep during the night (you know because I’m sleeping). It’s too far from my room and the receiver doesn’t come close to waking Arden.  She has woken many mornings with a low BG because no one heard the beeping. Do you know what would have woken me up, my new Wi-Fi enabled DexCom alarm clock. Honestly, my just imagined DexCom iPhone app would have woken me too as my iPhone docks in an alarm clock that magnifies it’s audio output. While we’re building the app let’s make a version that shows the line graph and outputs the reports... might as well get all we can out of the app consultant that you’ll need to contract. I’d like an iPad app too if you don’t mind... thanks!

How about a Wi-Fi enabled mattress vibrator. What if the clocks in the house switched to the Dex readout during alarms... how damn great would that be! These don’t need to be what ifs and two seconds of market research would tell you that there is market interest. 

Okay, that’s all of the consulting you’re getting out of me for free... Get on the stick and get these improvements to us asap. 

Does anyone else have a suggestion? Please leave a comment on the newly created post made just for your thoughts!

UPDATE: I was asked to be vague and so I will be. Let’s just say that the thoughts that I’ve had about how to make improvements to the DexCom are already in different stages of discussion within the company, as well as across the entire industry.

**

The following are archived comments from this post. You can post new comments below.

Adam

Better yet, on top of Wi-fi, why not do what Amazon does with the Kindle.  In the price of the Dexcom include 3G access.  That way, my son's Dexcom could alert me to a BG change at home, work or where ever even if he's at school or a friend's house!

Our son is 7 and will soon be wanting to go on sleepovers.  This is going to be difficult for us because Dexcom rarely wakes him.  With 3G connectivity, no problem.  The App you mentioned can now alert me at my house.  As long as he's in range of a tower, we're set.

Thursday, February 17, 2011 - 11:58 AM

Scott

Genius sir, c'mon everyone... I see you on Twitter. Comment and then I'll get this to DexCom. I've been known to make a persuasive argument here and there...

Thursday, February 17, 2011 - 12:06 PM

Emily B

Love these ideas.  LOOOOOVVVVE the sleepover thought.

Friday, February 18, 2011 - 11:37 AM

Stacey D.

These are excellent ideas!  And since I am a new iPhone owner, I am totally for the push notifications notion!!  Everything is becoming a part of wifi/3G technology and diabetes devices shouldn't be excluded from that concept.

Friday, February 18, 2011 - 12:16 PM

Sarah

To be honest, while all this is great, I just want them to hurry the *ell up and integrate with my Animas pump (or Arden's PDM for that matter) so I don't have two devices to worry about.

Friday, February 18, 2011 - 04:49 PM

Doug

my son has been using the Dexcom 7 for about a year and a half now... I requested these same things about a month after we started...  the range on the cgm is a real limitation... and as the father of a young son who isn't awakened by the cgm beeps or vibrations, we have a baby monitor set up in his room so we can monitor the alarms from our bedroom... would be really nice to be able to interact with the cgm remotely (clear alarms, check current bg, see the trend graph...)... sometimes we will still have to walk upstairs to his room and do a blood test just to make sure the cgm is giving accurate info... but that would still save us a lot of potential sleep time.   My original suggestion was some sort of 'docking station' for the cgm at night... could recharge and allow 'remote' access/control of the cgm through the docking station using weg/wifi/bluetooth/ or even a wired connection to another cgm control in another room...  even better would be if you could do away with the cgm receiver altogether and just use a smart phone for all of it... one less device for the child to have to drag around...

Thursday, May 26, 2011 - 11:19 AM