DSMA June Carnival: On Choosing Diabetes Technology

This month’s DSMA Carnival is all about choosing technology. Earlier this month, I went through a run-down of my opinions of different insulin pumps and why I chose to ultimately go on the Omnipod (which is forthcoming). Instead of talking about how I choose my diabetes technology, I thought I’d give a brief run-down of important factors to consider when deciding on your medical devices.

First, I always think it’s important to be clear that nearly every insulin pump and glucose meter do the same thing. Insulin pumps pump insulin, glucose meters give you a blood sugar reading. The biggest difference isn’t so much in what it does, but in how it does it. This is just to say that I wouldn’t go tearing out your hair trying to decide what pump to use. Whatever pump you use will work for its intended purposes. It’s in the finer details that the decision is really made.

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Five Questions To Ask Yourself When Choosing a Diabetes Device

1) Is this something I want to look at everyday? 

Listen, as superficial as design and aesthetics are, you are wearing this thing all the time. I wear my insulin more than I wear anything else, including my wedding rings (because I don’t wear them to bed or to exercise). Do not under estimate the importance of how the pump looks. Meter looks are a little less important since you aren’t actually wearing it.

2) Do I like the user interface? 

I find it vital to touch and feel and play with each screen of an insulin pump. I refused to choose an insulin pump until I could see what they all looked like. Some are a lot easier to read, some are more intuitive. Menus are all laid out differently and while you can certainly get used to one, it’s always good to make sure that it’s something you feel comfortable using. This is a completely individual opinion. It’s like following a fashion trend. Just because it works for someone else does not mean it will work for you. You have to try it out for yourself to see if it fits.

3) Will this device work with other devices I already have?

Continuous glucose monitors, your glucose meter, your computer’s operating system (PC vs. Mac) can sometimes make or break a piece of technology. If connectivity is important to you, you want to make sure it will work with what you already have.

4) Can I afford this device?

Insurance companies sometimes favor certain meters over others, so it’s important before you sign up to anything that you get an idea of what will be covered and by how much. There’s no point in falling head over heels in love with an iBGStar if your insurance company just laughs at you.

5) Do I like it?

I think a lot of us can get caught up in the opinions of others when it comes to diabetes technology. We’re always ready to evangelize our favorite pump, meter, app, form of exercise, etc. And we’re also ready to lay the smack down on anything that we don’t like (you know it’s true).

I remember when I was in college, thinking about what I wanted to be “when I grew up,” my dad and I had a conversation about being a pharmaceutical sales rep. He said I could work for Minimed. It was definitely a possibility, as I really liked Minimed (at the time). But I knew I couldn’t. I’m really perfectly comfortable with people using or wearing whatever device they happen to like the most. I don’t really see huge advantages to any system. They all have things that are good. They are all missing things that I think would be brilliant.

One thing that excites me about becoming a Certified Diabetes Educator is helping people find out how to make diabetes devices work for them. I don’t want you to manage your diabetes like me. I want you to manage your diabetes like YOU. What do you like? What works? What is appealing? Diabetes is one of the most unappealing diseases on the block, but we are also really lucky in that we do have some say in the devices we use. Most diseases don’t have these kinds of options. I’d be hard-pressed to call us “consumers” in the same way that we consume Apple or Coke products, but you do have the ability — most of the time — to choose what you want.

So don’t listen to me.

An Evening with Dr. Richard Insel

Dr.-InselLast Monday evening, my husband and I attended the annual Research Update through my local JDRF Chapter. The reason I’m so belated in updating this blog is that I kept misplacing my notes! But I found them and now sit back while I share some of what Dr. Richard Insel, VP of Research for JDRF, had to tell us!

Dr. Insel opened with a general “state of the union” for diabetes research, saying that a lot of “amazing changes in research” have happened in the last 10 years. While he emphasized the JDRF was now on a path to look at prevention, treatment and the cure, he reiterated that to JDRF, curing diabetes means “getting rid of it completely” but that JDRF wanted folks “healthy enough to benefit from that cure.” Couldn’t have said it better myself.

Dr. Insel explained that JDRF was committed to getting more research out of the laboratory and into the clinical setting with actual, real live people. Mice aren’t enough.

“Until you test in humans, you don’t know what you have. [Animal models] aren’t predictive enough,” he said.

What does JDRF see as a cure?

“Perfect glucose control without having to do anything in management,” Dr. Insel said. “A biological cure.”

Islet Cell Replacement / Regeneration

There are two main ways to do this:

1) Implanting or replacing new islets, encapsulated or using a physical barrier

2) Regrow new islets and tame the immune process that causes diabetes so they won’t be destroyed

So far, diabetes has been “cured” more or less via islet cell transplants. But it’s not a long-term feasible option because there are only 100-150 pancreases available each year, plus the immunosuppressant drugs are so strong that it can’t be used on children and it’s not ethical to use it on anyone who isn’t in dire need of a transplant, such as someone with severe hypoglycemia unawareness or other complication (such as someone receiving a kidney transplant as well).

Dr. Insel shared news out of New Zealand that Living Cell Technologies is making progress on using encapsulation technology to protect islet cell transplanted into the body. They may seek approval in New Zealand as early as 2016. JDRF has created an encapsulation consortium of researchers working to perfect encapsulation technology, and they have just completed initial human safety studies.

ViaCyte is another company that has made strides in encapsulation technology. They use immature islets that mature into mature islets in the body, turning into glucose responsive, insulin secreting islet cells. It’s taken 8-10 years to develop the technology, but it looks like they will be going into clinical trials for the technology next year.

Another interesting avenue of research is in pregnant women. Researchers have found that women, even those with type 1 diabetes, spontaneously generate islet cells during pregnancy which are not attacked by the immune system. Researchers are now focused on the question of “How does this occur?” and “Can we make a drug that mimics this?” In fact, after 50 years with diabetes, some people still have beta cell function. Some beta cells were even attempting to divide and multiply, but the immune system squashed every attempt. There is also work being done to see if there are drug like molecules that can expand beta cell numbers while also keeping them from dying.

Dr. Insel also shared that in animal models, alpha cells — glucagon producing cells — can turn into beta cells when genetically deleting beta cells. The alpha cells spontaneously become beta cells and they are protected from the immune system, so there is also research into whether or not a drug could flip our alpha cells and turn them into beta cells.

Protection from the Immune System

For a long time, folks have blamed the pancreas for just “up and quitting” on us — but that isn’t so! It’s actually the thymus gland, or the immune system controller, that causes the beta cells to die. The pancreas is really just a victim of friendly fire. There are bad immune cells, called T-cells, that we need to take out in order to stop the immune process from continuing again and again.

But what causes the T-cells to go haywire. They really don’t know, but Dr. Insel explains that it’s definitely a combination of genetics and environmental factors. In fact, 1 in 30 children in Finland will have diabetes by 15, while 1 in 400 children in the US will have diabetes by 18. Wow!

Preventing Diabetes — A Possible Stepping Stone

Although most of us with diabetes don’t really think much about preventing diabetes (hello, we already have it!), it turns out that a vaccine or other preventative step could also help us in the event we are able to replace islet cells.

There are several avenues that JDRF and researchers are working on, and I’ll touch on a couple:

1) Vaccines: researchers are looking into potential viruses that trigger diabetes. If they could find a virus associated with diabetes, such as the enterovirus, then a vaccine could be created. But this only works if a virus really plays a primary role in diabetes, otherwise it’s a waste of time. But they won’t really know until they investigate more instances of diabetes around the world.

2) Microbiota: microbiota has been linked to other gastrointestinal issues and diseases (like Crohn’s) but I haven’t heard much in the way of diabetes. However, it’s possible that there is an imbalance of healthy microbiota (a fancy term for good bacteria in our gut) and that is leaving us open for autoimmune issues. Allergies and asthma are also going up, so it’s possible all of this is connected.

In addition to finding a cure, JDRF is also focused on the payer side of the equation. Dr. Insel shared that JDRF was instrumental in getting CGMs covered by insurance companies, which gave commercial incentive for medical device companies to work on second and third generation devices. JDRF has to go beyond the discovery, Dr. Insel explained, and make sure drugs and devices are affordable. Dr. Insel also shared quite a bit about the continuous glucose monitor, but most of the information was repeats from previous conferences and lectures, so I will leave you to explore Google for more info on that.

Dr. Insel concluded saying, “We have to relieve the burden of this disease.” While the research into a cure is very exciting and something I’ve always supported wholeheartedly, it’s also important to realize that a cure won’t mean much to those of us funding it if we’re not here to see it because of complications. At nearly 28, I’m a third through my life expectancy, but I’ve already lived with diabetes for almost 20 years.

It’s very exciting to see all the possibilities that lay ahead of us, and that there are so many people working on diabetes. I’ve always been a big believer that you don’t want to put all your eggs in one basket, especially with something as mysterious and complex as diabetes.

I Get Around…

ImageI’m probably most well-known for my work on DiabetesMine, where I served as Assistant Editor for a year and a half, and then worked as a regular contributor for a few months after that. My school schedule means that I can’t keep up with the demands of being a regular contributor to DiabetesMine anymore, but that doesn’t mean I’m stopping my freelance work in the diabetes arena completely.

Today, you can catch two of my newest pieces, one on diabetes camps at A Sweet Life and an in-depth report on the risk of pancreatitis in GLP-1s and DPP-4 inhibitors (type 2 drugs). I hope to have more freelance popping up across the Internet, but the frequency will be a lot tamer than in the past. I have to keep the eye on the prize – being a CDE!

Speaking of which, I’m off to study for my next Anatomy & Physiology exam… Wish me luck!

Raising a Child with Diabetes: My Father’s Perspective

310456_10100125935850456_1678607276_nYesterday was Father’s Day, and in honor of that, I’m posting an interview that I conducted with my father, David, last month when he was in town on a business trip. My dad and I have obviously talked a lot about diabetes over the years, but not as much recently because we live three thousand miles away from each other (he in Oregon where I grew up, and me in New York). The day to day dialogue of diabetes has gone away, and now I mostly keep my parents apprised of my latest A1c or any changes in my management, such as going off or on an insulin pump.

I wanted to find out from him what it was like to raise a child with diabetes, since I can only talk about my childhood with diabetes from my perspective. Just to give some context for my dad’s answers, I was diagnosed with diabetes in 1994 and was on NPH and Regular insulin until 1995, then was on NPH and Humalog until 2000, when I went on an insulin pump. I graduated and moved away to college in 2003.

For another more personal interview involving talk on relationships and marriage, check out the other part of my interview with my dad at With Faith & Grace.

Allison: When I was diagnosed, did you guys talk about how you wanted to integrate diabetes or did you have a strategy on your approach?

Dad: You go through the phases of shock, denial, anger. I don’t know how quickly we embraced it, but seemingly quickly, we recognized it was with us, we recognized there was nothing we could do about it, so we said we have to normalize this. So diabetes and everything attached to it had to be part of life like, without being cavalier, taking care of contact lenses or brushing your teeth every morning. You had to make it part of everyday.

Now, I don’t regret this at all, but we had a very routine life by design, which made us boringly unadventurous by design. We ate dinner at the same time everyday. I would hate to be parent of a diabetic in chaos. And the one thing your mother and I have witnessed over the years, life in America or life anywhere, is that people live in chaos. Sometimes avoiding chaos is boring, and it can be too boring and too set, but if you have something like diabetes, one of the best survival skills is to be routinized. If you only randomly took numbers, if you only randomly ate meals, all you do is chase diabetes.

I don’t recommend anyone chasing diabetes.

When it came to transitioning diabetes care from you and mom to me, what was your approach?

You were more unique than you think since in a way you always insisted on independence. We basically handed you diabetes as early as you would have taken it. You actually took ownership of it early on.

What advice do you have for other parents?

An analogy is letting your kid tread water in the deep end, but three feet from the edge of the pool and with the parent sitting at the side of the pool right there. Meaning you let them go, you give them the impression they are on their own, but in fact you’re watching them. But even still, depending on the kid’s personality, they are going to do what they are going to do any rate. There are just times, especially as an old teenager or a young adult, where the training wheels are off and there’s no putting them on or hovering by the bike. The kid’s on their own.

This question might be better for Mom, but I know parents — especially when dealing with younger kids — often feel burned out. Did you ever feel you were burning out on diabetes, and if not, why do you think that is?

I don’t think I would characterize our issue with diabetes as burn-out. But what I experienced was, and I know your mother did too, was that you’re failure with various criteria of diabetes was ours. We literally would emotionally beat ourselves up when you had lousy numbers, and back then we didn’t really understand A1C. We were more wrapped around daily numbers. It was like “Oh my God, she’s high. What did we do wrong? What horrible parenting did we do today to cause her to be high?” And you just beat yourself.

A lot of people do that now! So what advice do you have for getting over that?

See a psychologist, because it’s going to happen. You have to embrace the fact it’s going to happen. And therefore while it happens you just have to say we will do better tomorrow. And you try to do better. All you can do is try to do better. But if you go around beating yourself and what’s worse, if a parent goes around beating the child, verbally or emotionally, going “What did you do wrong today?” You just have to completely divorce yourself from the numbers and say we will hit the reset tomorrow and try it again.

It’s more insidious but it’s very much like being on a diet. Now, the idea is that you have to be on a diet religiously all the time. But everyone knows that you can’t really be on a diet religiously all the time. So shit happens and you make mistakes. You say I’ll do better tomorrow. It’s like any rehab or twelve step program. It’s like being an alcoholic. “Well, I had a drink, I’ll not do that tomorrow.” That’s a good attitude. But forever bullshitting yourself saying, “Well, it’s now been five months in a row that I’ve been bad, oh I’ll do better tomorrow” when you know damn well you’re not going to be and you’re going to fake it out again. That’s when you’re in a bad spot. An occasional screw up is normal and acceptable, but to normalize your screw-ups and to lie to yourself about it and bullshit yourself about it is bad.

I remember Dr. Hansen (Editor’s note: my pediatric endocrinologist) saying there will be a cure in 5 to 10 years, and there still isn’t a cure. What is your feelings on the cure? Is it something you guys expected and work towards or is something like if it happens it happens?

Well, we always expected a cure. Unfortunately for me, having observed business, the medical environment, and diabetes in specific, I don’t really there’s very much effort going into the cure because there’s too much money is being made in the maintenance. I think by now they could have mechanically made an artificial pancreas that actually work, I’m interested and pleased in pancreas transplants, but it requires a dead person to fix a live person. That’s not really a cure.

It just seems that knowing the problem, that it should have been cured by now. And I just don’t see cures happening, but I see a lot of work in maintenance, and certainly type 1 is the runt of the litter. There are too many type 2s, and the American diet is going to breed type 2s like mice. So that’s just going to get much worse and that’s actually curable if people would quit being stupid with their diet. So I just don’t see an economic incentive to cure diabetes.

If you were talking to a newly diagnosed parent about raising a kid with diabetes, what would you want them to know about raising a kid with diabetes?

It’s just what we’ve always said and always done. You’re normal, with a chronic condition. There are no behavioral changes. You get to be yell at and be mad at your child. They can do whatever they want to do. You don’t baby the diabetes in any way, shape or form. The only thing we learned a little late in life is when a diabetic child is acting completely obnoxiously off the rails, before you start yelling at each other, take their number and if they’re high, close the door to their bedroom and walk away. That’s tough because they know not what they do. So you’re arguing with temporary insanity. It took us awhile to get to “It’s not her, it’s the diabetes talking.” But the thing is, the diabetic will say incredibly hurtful things while they’re out of control.

So I remember some things you guys started to do was celebrate my diaversaries and giving me a dollar when I was 100. Why did you start that, do you think it’s good to reinforce diabetes management with money and prizes?

Well, it failed miserably as an incentive. It just became a talking point and a cute little target. I mean, did it work? Did you have fun with it?

Yeah.

Then it worked and you had fun with it. And you don’t know until you do a retrospective going did it work and did you have fun with it? I mean, on a good day it’s annoying, and on a bad day it’s a curse. So you try to put as much of a happy spin on it as possible.

I would say that of all the diseases children get, it’s not horrible. At least, we didn’t think it was horrible, but other people think it’s horrible. It’s chronic, but it isn’t horrible. You’re not in a wheelchair, you’re not debilitated, you’re not limited in your life. You’re not a cripple. You’re not a handicap. You can do everything other children can do. All it requires is maybe 30 minutes worth of maintenance everyday spread over every 5 to 6 hours.

I think it’s a little more than that.

Okay, maybe an hour. I mean to take your number and give yourself a shot, total time in really doesn’t add up to a great deal.

But don’t you think you were thinking, and maybe this is more — well, I’m curious how Mom will answer this — but don’t you think the time thinking about diabetes is a little more constant. Like is she low? Was that enough?

In the beginning, when you were a child, we probably thought about 2-3 hours a day. We’re talking about the work effort into maintaining diabetes versus the mental effort of coping with it. When you were a 12 year old, how often did you think about it? And if you say, not so much, there you go. When we were training you and training us, we thought about it probably three hours on average. Maybe two, maybe four. I don’t think I would characterize it as more than that as mental involvement.

We were fortunate enough that you did take ownership of your diabetes early on. So we stopped taking your number quickly, we stopped giving you your shots within a year or two. You didn’t really seem to outwardly object or handwring about shots and numbers.

I would say that for two to for years, we were mentally involved in bad numbers. That’s when we sort of pulled away from it going, “We’ve got to stop beating ourselves up.” Your number was not a score. It was not like golf where the low score wins. “Oh look a 110! We’re so cool! We’re the best!” “Oh no, a 200! Oh shit! We’re lousy parents.” “325! God, we suck! Let’s go beat ourselves with sticks.” You just can’t do that! It’s not a score. It’s not an indication of how you are as a parent, as a diabetic parent, or as a human being.

That is my advice to parents. You need some separation between the score and you and how you think of yourself and how the child thinks of themselves and how you treat them when there’s a bad number. It’s not finger-pointing. It is “We will try to do better, collectively.” Everybody’s got skin in the game. You know what? Thoughts and emotions are irrelevant. Bottom line, I don’t care what everybody thinks. We’ve got a disease and we’re just going to have to deal with it.

“Well, I just think we’re going to knuckle down and start testing every hour and a half.” No, that’s not the answer. “Well I’m tired of getting involved, I think we should just quit looking at this thing for a few days.” No, that’s not the answer. Grind it out, but you’ve got to pull your brain away from it.

Nowadays, thinking about diabetic who are adults, did you guys feel that you were prepared in being away from me as a college student and as an adult? Do you wish there was more training or support in transitions?

This is the only point where I think your mother would give a different answer. I was fine with what we did. I’m more dispassionately inclined. Your mother, perhaps being a woman, perhaps being her, was more emotionally involved with the ups and the downs, mainly on the downs. I like to observe other parents. I observe other parents who overshoot or undershoot the problem. And I found that I was more satisfied with the way I was handling it for me than watching other parents handle it.

How did you handle it?

I go back to your friend from camp. I thought her parents were the most God awful diabetic parents. I think it had to do with her personality as a child and her parents as parents and how it related to her diabetes. She was a horrid diabetic as a teenager, very self-destructive. As an observation, I didn’t think her parents were playing the same game. Her mom was too involved and her dad checked out. Her mom’s over-involvement pushed her away and she was very self-destructive, and that’s unfortunate.

So you felt you were more even-keeled?

Your mother and I did not fight over parenting a diabetic. We seemed to be in the game the same away. The only time we pulled each other off of something was with bad numbers. I was the more neutral male, unemotional, playing Mr. Spock. Logic says we did everything fine, shit happens.

Amen! Curious about my mom’s perspective on things? Her interview will be posted on The Blood Sugar Whisperer later this summer.

Dexcom Surprises

calibrationThe other day was a frustrating day on the Dexcom. In the afternoon, after a luncheon I had thrown at my apartment, my Dexcom was showing me at a steady 270 mg/dl while I was working my retail job. It wasn’t coming down, which I found really odd, so I went into the back to test. I was 140 mg/dl.

Sigh.

So I callibrated, and all of a sudden the Dexcom alarms asking me for a blood sugar reading! But I just did one! 

The second calibration held and the Dexcom worked again.

Later that night, as I was getting ready for bed, the Dexcom showed me at a steady 117 mg/dl. Awesome, I thought. I really showed that luncheon who’s boss! But then when I tested, I rang in at 295 mg/dl! What the crap?!

When I calibrated, the Dexcom once again prompted me for another reading.

At this point I thought there was something fishy going on with my sensor. I’d had this alarm prior but I could never figure out what it was from, and so I though maybe it was a sign of a wonky sensor or a bad connection. Frustrated and not wanting to deal with bad reports from a Dexcom, I ripped out the sensor on just Day Five. Perhaps a bit premature, but it was late and I was frustrated.

The next day, I finally got around to tweeting about what had happened. Surely someone on the Internet will know! And sure enough, three people wrote me back explaining that the Dexcom will prompt you for a second blood sugar reading if the calibration reading is way off from what it currently has you at. They say that they do that because the Dexcom doesn’t want you feeding it a potentially erroneous blood sugar reading, for instance, if you had some food still on your hands.

Smart thinking, Dexcom! I totally would not have thought that it was actually a safety precaution and I had never heard of anyone saying that the Dexcom will prompt you for a second reading if your meter reading and Dexcom reading are very far apart.

Goes to show you learn something new everyday!

Do you have any technology surprises about the Dexcom or Omnipod that I should know about?

Disconcerting

Like many people, I always believed that I woke up in the middle of the night when my blood sugar was low. Nineteen years of four a.m. wake-up calls, stumbling into the kitchen and trying to restrain my half-asleep, sugar-deprived body from consuming the entire contents of my refrigerator taught me so. Last fall, I wrote an article about how that’s probably not true. In fact, the majority of our lows are probably unaccounted for, at least in those of us who don’t wear a CGM with a built-in alarm system.

Now that I’m on Dexcom, I’ve been intrigued as to whether or not there are any times when I normally would have slept through a low. For the most part, it’s been hard to tell which one is waking me up: the sensation of a low or the alarm. Last Saturday, I thought I had proven that I do always wake up, because I woke myself up with a low blood sugar and checked with the Dex because I couldn’t hear it alarming. Turns out, it was alarming and I just couldn’t hear it. So I woke myself up naturally from a low. Points for Allison.

But then last night happened.

This morning, I woke up and felt a little high. Not terrible, but a little off. I flapped my hand over to my nightstand to check my Dexcom, and I couldn’t find it. In fact, I couldn’t find it anywhere. My husband (the ever reliable sleuther in the family) found it under my pillow. Huh. Weird. I don’t even remember putting it there. At any rate, I checked to see what my blood sugar was. It read 217 mg/dl. Makes sense. Then I flipped back to see how my night was, and I saw something disconcerting.

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You see that red section? That’s a low blood sugar of about 65 mg/dl. And it lasted about an hour, possibly more.

I didn’t wake up in the middle of the night, and neither did my husband. I sleep with earplugs, and the combination of that with the CGM under the pillow meant it was likely alarming for a long time before my body’s natural sugar kicked in and turned off the alarm. I have to say I’m surprised that I slept through the low knowing that the CGM alarms are supposed to be pretty loud. In fact, I even double-checked with my husband to see if he could recall us waking up in the middle of the night (me rummaging around when low usually briefly wakes him up).

Apparently, we slept through a low. I’m sure this has happened before. I’m sure it will happen again. But I can also say that I’m very thankful to finally have a CGM that can tell me in the event my body is unable to.

Of course, I’ll have to remember to keep it where I can actually hear it.

 

Has a CGM ever surprised you with a bit of information?