Little People, Big Problems

It's easy to look at children and imagine their lives as simple. It's easy to think that their concerns couldn't be as deep or strongly felt as yours. Who knows why? Perhaps because they are smaller or maybe they seem protected simply because of their age? I did a Google image search on the word 'innocent' and the majority of the images that it returned were of children, I think because that is how adults think of them. 

Most parents go to great lengths to protect their children from the world for as long as they can. I always imagined that it would be another child, the Internet or some other outside influence that I could not predict and not defend against that would show my kids the world for the first time. Maybe it would be an image online, a hateful thought or the brutality of another - I didn't know. I do know that I expected this to happen, but not this soon and not this way. Children should get to learn about life's truths slowly, not all at once and not so young.

Arden was recently invited by a friend to a sleepover party. She has slept away at her Aunt's house many, many times in the past and I have a rather foolproof system for managing BGs during these times so we didn't think twice about allowing Arden to attend the party. I have to admit that I imagined that we very well may hit a speed bump during the evening. I considered that Arden may get uncomfortable at another's home, that party food may mess up BGs to the point where they become difficult to manage and I was even ready for her to just not have a good time. I thought any, all, or some of these possibilities may prompt Arden to ask to come home.

But it wasn't any of those things that caused her to text me and ask to be picked up.

I didn't ask why she wanted to leave when she texted, I just told her I'd be there and came as soon as I could. Arden met me at the door with her sleeping bag and pillow when I arrived, she even tried to walk past me to our car as soon as the door opened. I stopped her and said that we could leave but first I wanted to understand why she wanted to go. We went back into the house, put down her things and retreated to the backyard where we could speak in private - we sat next to burning fire pit and I asked her why she wanted to leave.

In the minutes that followed I had the most mature conversation with my daughter that I've ever had. She wasn't uncomfortable at her friends home, that's not why she asked to leave. It wasn't because she was having difficulty managing her blood sugar, it was 115 when I arrived and she had been at the party for over four hours. It was none of the things that I expected and nothing that I could offer a concrete fix for. Arden was scared of her diabetes. Not the management of it, not of dying, she wasn't specifically afraid of any one aspect of her disease... just afraid of the unknown that it brings to her.

One of the best parts about being a kid is feeling invincible and never once having to consider that anything in the world can fell you. It's that gift that allows kids to jump from trees without pause. They never think that anything bad can happen to them. Diabetes took that from Arden. She wasn't worried about a low or a high, not about a bolus or an alarm. She was in fact, completely confident that the plans we had in place were going to keep her safe, healthy and happy - but she couldn't plan for the unknown and that concern was too much for her to bear.

I thought about reassuring her and then trying to get her to reconsider but instead, I looked at Arden and did the only thing that made sense. I gave her a hug and told her how proud I was that she called me. I reinforced that there isn't anything that she can't tell me, and I made sure that she knew her feelings were safe with me. We finished speaking, played with the embers in the fire for a few minutes and then went home empowered, not defeated. 

My wife will be very excited when she reads this next part because I think it means that the almost twenty years of effort that she has put into me, may finally be paying off.

As a man I always find myself wanting to fix things for the people I love, but often that inclination means telling people that their feelings aren't valid. "Don't be scared" and "This isn't problem" serve to diminish feelings and I'm really proud to tell you that I didn't say anything like that to Arden as we spoke. I'm even more excited to say that as I listened to how Arden felt, I really understood her feelings and I didn't have the desire to bend and manipulate the situation to accommodate those feelings. I just let her feel, and I listened. It took me until I was in my forties, but I think I'm starting to get it. I'm not here to fix anything, my being here fixes things.

What is StripSafely?

StripSafely is the initiative to bring awareness to the issue of test strip accuracy. I'm hoping to help bring attention to the StripSafely efforts by helping to make you an advocate for the cause. You are not being asked to make a donation.

If you could just take a moment to read more about the efforts and then follow StripSafely on FaceBook, Twitter and on their website, you'll be supporting people who I completely trust to help the diabetes community have a voice in the fight to change the current levels of accuracy acceptability. I am not affiliated with StripSafely.

Issue - From the StripSafely website:

At a recent public meeting the FDA acknowledged1 that there are some 510(k) cleared blood glucose (BG) meters and strips that do not meet the accuracy standards for which they were approved. There is currently no clear course of action to insure people with diabetes are using blood glucose strips that meet regulatory requirements.

The rest of this statement can be found at this link. 

Who, What, How?

StripSafely is an ad hoc Diabetes Online Community (DOC) collaboration to help the general public understand that there are inaccurate blood glucose test strips. We hope to get folks involved to do something about that. By something, we mean write the FDA, elected officials, and the news media.

The StripSafely campaign was created by Bennet Dunlap who is the site admin. Scott Johnson, Christel Marchand Aprigliano, Kerri Sparling, Cherise Shockley and Kelly Close joined early on and contributed their skills. The campaign is not affiliated with strip manufacturers, the FDA, or any other remotely organized group.

The real work of this project is being done by community members who write letters and blog posts as part of this campaign. See the social media section for these efforts. We would love to feature your letters and blog posts. That’s why there is a form on every page’s sidebars to help you share what you have written.

Thank you for taking the time to find out about StripSafely!

Book Review: Raising Teens with Diabetes

Amazon

This is the review that I posted online for Moira McCarthy's new book -- Moira is a friend and the book is from my publisher but please don't let that diminish the review... I mean every word of the it. The book is marvelous!

I found my diabetes crystal ball and it’s Moira McCarthy’s new book, ‘Raising Teens with Diabetes: A Survival Guide for Parents’. My daughter (diagnosed with type I diabetes at age two) is only nine years old, but the topics Moira covers are the exact ones that keep me up at night as I try to imagine what my daughter’s teen years will bring.

‘Raising Teens with Diabetes’ is written in the voice of a mother but with the skill of a seasoned writer and each page makes you want to read the next. I genuinely can’t remember the last book that taught me so much without preaching or making me feel like I was in school. The thought of my daughter’s teenage years still give me pause but now with Moria’s help, I know what will be coming our way and I have a much needed head start on understanding how my family can handle those issues.

I really appreciated how the book was structured. It contains personal stories that are told with heart, reflections from Moria’s now adult daughter and easy to follow, common sense approaches to life with type I diabetes that reveal a lifetime of amassed wisdom. I am a thirteen year stay-at-home dad, a seven year caregiver to a daughter with diabetes and I’m putting Moira’s book on my shelf so I can reference it for the next decade.

First Impressions: New, Smaller OmniPod

Demo Pod with Clear Shell

Clearly the new, smaller OmniPod is... new and smaller. But is it different, better and will your BGs magically be perfect when you use it? Most importantly... is it still the OmniPod that you know and love? What follows are my unfiltered initial thoughts about the new OmniPod system. This blog is not a complete rundown of every change and feature, today I'm writing about the stuff that jumped out at me after using the new OmniPod for about a month. Arden has recently completed the first box of ten pods and I feel ready to share my thoughts on that experience. Okay, are you ready? Are you excited, nervous, wrought with fear? No need, it's pretty much the same OmniPod, just smaller, newer and with a few changes that I think are worth talking about.

Size

In my opinion, size doesn't matter as much as footprint. Insulet has said in the past that the new OmniPod is, "Approximately 1/3 smaller than the current pod". That sounds impressive, and it is, but what does it mean and are the measurements as important as the overall experience for the wearer? Let's take a look...

You can see in the images above that the new pod is smaller in dimension, though the numbers suggest not by much. That reduction, however seemingly insignificant, has created a footprint that changes the way the OmniPod interacts with even the smallest body and that is in my opinion, what is so exciting about the new pod.

Our first month with the new pods has shown me that the reduced footprint brings:

Less drag - During activity or motion, the pod doesn't pull when your body changes directions in the same way that the old pod did.

More site possibilities - Small or lean people can sometimes have trouble finding locations on themselves that don't present challenges. The new pod creates more sites for those people. One example is that Arden can now wear the pod on her lower back, a site that wasn't available to her with the first generation pod because of it's larger footprint.

Less noticeable - The reduction in overall size and height creates more opportunity for the pod to match up with your body's natural contours. The reduction in size has created a device that is one step closer to being a seamless part of the wearer. It may take years before a pump exists that the wearer can't feel, but this is definitely a positive step in that direction.

Smaller means lighter - Not 1/3 lighter but there is a noticeable difference when you hold the two in your hand.

Easier to hide under clothing - You know, cause it's smaller.

It's cuter - What, it is!

PDM (Personal Diabetes Manager)

One day last year Arden's 1st gen pod experienced an error about four minutes before her bus was about to pull up to our home and I was able to change that pod without Arden missing her bus. How could I do it so fast? Muscle memory. I was at the point where I didn't need to look at the buttons during the insertion process, I'd done it so many times over the years that it was like typing. I had no need to look at the keys or even pay complete attention to what I was doing because I'd done it so many times before.

With the new system I find myself looking down at the PDM and perhaps that's not a bad thing. There are a few new screens and some redundancies that are meant to add safety. I can see how they were needed and I don't imagine that it will take users of the previous PDM very long to learn them. New users shouldn't be bothered greatly by the differences because none of the new screens are ridiculously unneeded or difficult to maneuver. It's my understanding that some changes were deemed necessary by the FDA so, like them or not, they are here to stay. Here are two examples of new screens:

If you look at the image below you will see that the new PDM requires that you confirm who you are before beginning. If you look closely you'll see that the "Confirm" button even changes positions each time that the PDM comes online. This may not be a safety issue for most people but in households with multiple people using an OmniPod, it's a big deal. You don't want to bolus the wrong person, a problem that is increasingly more possible with the new PDM's stronger signal range. Temp basal adjustments now require an extra step but the process removes the confusion that some experienced in the past by asking you up front if you want to increase or decrease the basal rate. Bonus, you are now informed of when the temp basal will begin and end on the final temp basal screen (I like that feature).

Signal strength - So this is a feature that I think may only matter to caregivers of people who use the OmniPod. I don't imagine many adults are being bolused by another person, so signal distance probably isn't an issue for them. Having said that, the signal distance is greatly improved. In fact the distance is a vast improvement over the first generation PDM and it even works through some walls and floors (Though not as well as the DexCom G4). Take note that the PDM can still have an issue finding the pod at close range if your body is shielding the pod. Overall, the improvement is amazing... if you don't believe me you can check out this video that I recorded and see for yourself.

Nuts and Bolts and Stuff that went wrong.

We've had three pod failures during the first box and I'll admit that I was worried for a few minutes but it's been smooth sailing since then. Coincidence? Early product issues? I don't know. What I do know is that Arden has been using the OmniPod for a very long time and we've maybe had, I'm guessing, twenty that have needed to be replaced in four years. The strangest part about OmniPod errors is that they come (At least in this house) in bunches. We can go six months without one and then have three in a month. It's difficult at times not to look into things too deeply when that happens but in the end, it always seems more like a fluke to me than anything else. Plus, other pumps have their own issues that OmniPod doesn't, so I take the spectacularly good with the bad.

Here's where I love OmniPod and the recyclable nature of the pump. I bet that we've all experienced an error that sometimes requires us to send the pod back to Insulet for inspection. Those pods help the company to learn why errors are happening and when they have their answers, they are able to make adjustments to future production runs that eliminate the issue. In short, OmniPod is able to upgrade their pump without having to replace each users device and that only benefits the consumer.

So, does it suck when three out of ten pods fail, it does. Did I get pissed when that happened, I did. Did Arden complain about having to change her pod three times in five days, you better believe it. Do I have more than a reasonable expectation that this won't be the situation for every box we receive, absolutely. Am I hopeful that six months from now the issue we experienced will be eradicated, I am.

Other Stuff

Apparently filling a new pod with more than 200 units of insulin can cause an error. Be on the lookout for a communication from Insulet about that soon. In the meantime, don't fill your pods with more than 200 units.

The syringe that fills the pod has a much short needle than previously.

The cannula is blue now so you can see it easier after it has deployed.

The PDM reminds you to test after a new pod has been placed.

There's a little window on top of the new pod that turns pink when the cannula has been properly inserted.

The cannula now enters at a different angle, Arden doesn't notice the difference and insulin delivery is unchanged.

Insulet Customer support has been overwhelmed of late making it nearly impossible for customers to get their calls through. I've had trouble and I know from watching online conversations that so have most of you. The other day however, on August 31st, a CSR picked up my call on the first ring. That experience led me to wonder if Insulet was perhaps getting a handle on the problem, so I reached out to the company and asked if they would like to make a statement here on Arden's Day about the recent trouble they've had answering the phone. 

With regards to customers calling for service, we realize that we haven't lived up to our usual standards lately, and we apologize sincerely to anyone who's experienced this first hand. We can assure you that it is our foremost priority to get back to our usual high standards of service. Our customer support teams have worked around the clock to respond to all inquiries in a timely manner, and in response we've done our best to expand the teams to match the high demand. As we've ramped up, and as we're getting closer to having converted all of our OmniPod wearers, we're also experiencing better service levels. We're not quite there yet, but we're seeing good improvement. To clarify a little bit, the nature of phone calls are manifold, and the teams equipped to respond to certain types of calls are not one and the same because they require different types of expertise. Unfortunately, while a majority of calls have been related to orders, you will find that some of these calls end up with our product support teams and vice versa. Billing is an example where we don't receive a lot of calls typically.  We do acknowledge the inconvenience and disruption this has caused to some, and for that we're truly sorry. We appreciate your understanding and cooperation as we finalize the transition of all users onto the new OmniPod. - Hjalte Hojsgaard, Director of Marketing for Insulet

Final thoughts

The overall size decrease is amazing, a smaller footprint means everything to kids wearing the OmniPod insulin pump.

I wish the transition went a lot smoother than it did but I'm hopeful that many lessons were learned about product transition as well as how to navigate the world of the FDA while seeking clearance for a new device.

Arden likes the new OmniPod a lot!

I don't see any changes in Arden's BGs with the new pod. They aren't any better or any worse.

We haven't experienced any change in adhesive potency. Swimming and bathing are all status quo for Arden.

Arden wants me to tell you that the sequence of clicks that occur before insertion has changed. Those of you who prepare yourself mentally for the needle buy counting those clicks will need to adjust.

I'm already excited to see what the next generation of improvements will bring!

Important! I am currently providing Insulet with six written pieces for their blog Suite D. Two have already run, one will post soon and three more are on the way. I was compensated for my writing. Please know this, no freelance job is more valuable to me than the integrity of Arden's Day and the information that we (You and I) use to make important decisions about the health of the people that we love. If there was something bad to say about the new pods or if I had any concerns about something Insulet related, I would say so here without hesitation. Insulet has never asked me to have thoughts that aren't my own and if they did or ever do, I would decline. I am only compensated for the writing that I do for their blog and I am not compensated in any other way. My family pays the full amount that our insurance doesn't cover when we buy Arden's OmniPods.

Update on Wednesday, September 25, 2013 at 11:03AM by Scott Benner

Arden just received a new supply of OmniPods from Insulet and this note was included in the order.

Left, Left, Left, Right, Left.

Arden's right hand knows a secret that her left hand doesn't, but it wants to tell...

I know that there are days when you worry about your child's ability to adapt and grow with type I diabetes - I worry too. That's why I loved it when Arden came to me recently for help becasue she couldn't figure out how to test the fingers on her right hand. Arden is right-handed and the other day she came to me and said that she knows she needs to vary the fingers that she uses for testing more frequently. The problem with that... she can't seem to hold the lance properly with her left hand.

This was maybe some of the best news that I heard all summer, here's why. First, it means that she really does hear the conversations about site rotation and she understands them. Second, she hit a speed bump and wasn't afraid, embarrassed or nervous to ask for help. Last of course, she is taking ownership of her diabetes, slowly, as she is prepared to do so. Diabetes on her terms, I love it!

The rest of the tale isn't as story book. I too wasn't able to hold the lance properly left-handed and after two tries she, a bit annoyed, took it from me and then proceeded to similarly fail at the task. So while the core issue was left unresolved, all that the issue shed light on is now out in the open and cause for celebration. That celebration only resides however, in my head and on this blog, two places where Arden doesn't have access. I did tell her that I was proud that she was thinking about rotating and we spoke for a few minutes about the fact that it would take some practice to use her left hand for the task, but I didn't make a big deal about it, not to her. I am however, celebrating in my head. This was a great moment and a clear sign of maturity and understanding.