When New Recipes Go Wrong

Welcome to type 1 diabetes: where you should know how much you will be eating, when, and what it’s made of— it’s like having a meeting to plan a meeting for the meeting.

Our son’s blessing (and curse) is that he loves food. Two weeks after his diagnosis at three-years-old, we started pre-bolusing because we knew he’d eat the food on his plate and probably ask for more.

In our house, no food is off-limits, but we try to eat locally and responsibly: a little bit of all things. We’ve observed vegetarian diets, belonged to a CSA, garden, and eat fast food on a bi-annual 1,700 mile road trip.

A little bit of all things. All this is to say, in general, we read nutrition labels, understand them, and conduct a quick benefit analysis for the food and occasion. If you read nutrition labels, you’ve probably figured out that about half of the shelf-stable food sold in the typical American grocery store should be a rare treat instead of a staple.

No food is off-limits for our child with T1D, but we’re using our insight of carbs and insulin (that we can see with a Dexcom) to inform more of our family meal and food decisions. Lately, I’ve been experimenting with a few substitutions: almond milk (1 carb per cup, instead of cow’s milk, 12 carbs per cup), applesauce and ripe bananas as a sweetener, almond meal and coconut flour, and chia seeds. We rocked a post breakfast BG with these Paleo banana chia bites.

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An ounce of chia seeds contains 12g carbs, 11g fiber, and 4g of protein. I was fairly certain we’d come across a diabetes superfood. Then I made this chocolate pudding, that uses dates as a sweetener, almond milk, cocoa powder, and chia seeds.

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WTF chia seeds? We had something special, then you had to go and ruin it with an overly sweet date.

 

 

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Diabetic v. Diabetes

My son was diagnosed with type 1 diabetes when he was three, so it took some time for us to master a new lexicon that had suddenly become part of our daily language: ketones, glucagon, hypoglycemia, and the list goes on. For the first few weeks after diagnosis we moped around the house, afraid to leave for fear of restaurants and grocery stores, puzzled at how to check a blood sugar in the car with a kid in a carseat. During this time, Henry had lots of questions about his “dia-bee-bees.”

Even in those early days after diagnosis, when someone referred to my son as “a diabetic” it irked me in a way I didn’t fully yet understand. When I broke the news of Henry’s diagnosis to friends and family, I closed the email with, “Henry is a healthy three-year-old boy, who also happens to have diabetes.” In those early murky days, when I was struggling to understand the difference between Lantus and Humalog, it was always clear to me that Henry was a person before he was “a diabetic.”

The 2016 Standards of Medical Care in Diabetes is out, and there’s a huge shift in the lexicon surrounding diabetes. The Summary Revisions section declares, “In alignment with the American Diabetes Association’s (ADA’s) position that diabetes does not define people, the word ‘diabetic’ will no longer be used when referring to individuals with diabetes in the ‘Standards of Medical Care in Diabetes.’ The ADA will continue to use the term ‘diabetic’ as an adjective for complications related to diabetes (e.g., diabetic retinopathy)  (54.)'”

“Diabetic” is an adjective for complications related to diabetes, not my kid. My kid is a person with diabetes. Sure, “person with diabetes” (PWD) is more awkward to say; there’s three additional syllables, and the language is obviously stretching to avoid labels, but the change in perspective can be life-enlightening.

At our house, we used to call the Fed-Ex delivery van “the pincher truck.”

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a pincher truck on delivery

This made total sense to Henry, who came up with the name. One day after he’d spent the night in the hospital, his parents, who’d never physically hurt him, had to hold him down 5-7 times a day and give him shots. Not only did they have to give him the shot, but they had to hold the needle in and count to three just to ensure better delivery of the insulin. Sometimes, they had to do this in his sleep. Then they started taping these pinchers (Dexcom) to his skin, and these pinchers came out of the pincher truck every month or so.

Henry’s almost two years into living with diabetes. He wears a pump and CGM (continuous glucose monitor), and he understands why. He’s also learned that sometimes toys come out of the pincher truck. He’s learning there’s never just one thing in this world. There are people, and some of those people have diabetes.

The first line of the 2016 Standards of Medical Care in Diabetes Introduction reads, “Diabetes is a complex, chronic illness requiring continuous medical care with multifactorial risk-reduction strategies beyond glycemic control. Ongoing patient self-management education and support are critical to preventing acute complications and reducing the risk of long-term complications.” That’s some heavy shit.

Here’s the subtext of that Introduction. Diabetes is a disease and a condition. Diabetes (types 1 and 2) is presenting complexities to a medical system that’s been modeled on fixing acute conditions, not managing a chronic disease across a person’s lifetime, which is why so much of the care, education, and financial burden for diabetes falls on the person and the person’s family.

My son needs strength and confidence to take the extra steps of self-care to manage his disease. At five-years-old, he’s already making sacrifices that are necessary to live a healthy life with diabetes. Those first seeds of strength and confidence come from others seeing him as a person first, not a condition.

Diabetes & Anniversaries

On January 11th, two seemingly unrelated images from the past crossed my Facebook newsfeed. The initial image, from JDRF Canada, celebrated the first injection of insulin given to a human 94 years ago on January 11, 1922. The patient was Leonard Thompson, a 14 year-old boy in a diabetic coma, what was then the end stage of type 1 diabetes. Within hours Thompson began to recover, and the discovery of insulin was immediately heralded as one of the greatest accomplishments of modern medicine. In fact, the The Nobel Prize in Physiology or Medicine was awarded to Banting and Macleod in 1923.

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I’m fascinated with the medial history that surrounds T1D— both in the disease’s enigmatic nature as well as the scientists, doctors, and patients that seek to end T1D.

The second picture that crossed my newsfeed is from January 11, 2014. As a family, we were looking forward to seeing our first movie in the theatre and taking a walk downtown afterword. The songs and characters from Frozen swirled on the screen, and my daughter sat on the literal edge of her seat, holding my hand and inhaling with delight. Henry collapsed into his papa’s lap, and barely moved during the show. Since this was his first time in a theatre, I thought that maybe the light and sound were disorientating to him. I tried to make light of his grumpiness, so I took a picture of him.

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January 11th, watching Frozen;   diagnosed with T1D on March 6th

Now when I look at the picture, I see his flushed cheeks and puffy eyes, which happen when he’s had a persistent high blood sugar. The small Sprite in the cup-holder (probably the second or third soft drink he’d ever had), haunts me, and  I understand why he was lethargic during the movie and walk.

Around the time of the photo, the only symptoms he showed were irritability and lethargy. About three weeks later, my mother visited and commented on the heaviness of Henry’s morning diaper. I said, “I think he might have diabetes.”

When I said that, I didn’t really think Henry had diabetes, but I must have said it to voice an irrational fear, so the absurdity of the worry would become a talisman against its reality, like knocking on wood.

Parents of young children with type 1 diabetes often talk about the last picture of their child before diagnosis, noting the bittersweet moment. Usually, the photo shows some evidence of weight loss or lethargy, so parents beat themselves up for not knowing what was going on. On the other hand, there’s great liberty, because they didn’t know what they didn’t know— the ceaseless, worrisome nature of type 1 diabetes— a paradox  photo of a really sick kid in a last moment of joyful blindness.

When both these pictures crossed my newsfeed on January 11th, my first thought was thankfulness. How little time has actually passed between these two moments, but how many lives. Henry’s great grandfathers were born before the invention of insulin, and it’s only because of insulin that Henry’s alive.

In the early days after a T1D diagnosis, there’s shock and sadness, but there’s also an awareness of the great heritage of suffering and success that comes with T1D. I hope we’re at a moment in T1D history when the burden of care improves and the instance when some unlikely, scrappy doctors and scientists stumble onto the next breakthrough.

 

Q. How Can Doll Toys Make People Angry? A. Add Diabetes.

Right before the new year, my Instagram and Facebook blew up with images of young girls peering longingly into American Girl Store windows at this.

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a diabetes care kit from American Girl

Initially, this was a feel-good story. The American Girl company responded to a petition created by Anja Busse (11 when she started the campaign two years ago) for a “Diabetic American Girl.” There’s a Facebook page to support the idea and the petition garnered over 4,000 signatures. And at the start of 2016, American Girl responded by releasing its diabetes care kit. 

How could this story go wrong? A young girl became an advocate and a company responded with an ethical decision that could help potentially thousands of children feel a little bit better about living with a chronic disease. But then the ignorant trolls.

screenshot_2016-01-03-08-32-51This is another example of someone in the fitness community not understanding that type 1 and type 2 are different diseases. To Vinnie Tortorich’s credit, he’s now educating himself on the fact that type 1 is an autoimmune disease and is unrelated to lifestyle and diet, unlike the CEO of CrossFit.

Kids who live with type 1 diabetes encounter many hardships, and aggressive ignorance by educated adults is harmful. Unfortunately, the only way to correct a lack of knowledge is to speak up during a diabetes dust-up.

The American Girl diabetes care kit is a victory. If a major corporation like Mattel (which American Girl is a subsidiary of), can get diabetes type 1 and 2 right, then so should CrossFit, the CDC, and anyone who shares a public opinion that expresses shame and blame over understanding.

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The CDC is Getting Diabetes Wrong

A recent article from diaTribe, “New Study Suggests Childhood Type 1 Diabetes and Kidney Disease are On the Rise,” should have T1D families and non T1D families alike on the look out. Basically, the article cites a research study published in Diabetes Care that uses data from insurance companies to draw the conclusion that in 11 years the instance of type of 1 diabetes has almost doubled in children.

Here’s the poignant quote from diaTribe’s article, “According to a new study in Diabetes Care, more US children and adolescents have been diagnosed with type 1 diabetes in recent years: the disease’s annual prevalence in a large, insured population increased 53% between 2002 and 2013, from 1.48 to 2.33 cases per 1,000 people. The study used data from insurance companies to survey the rate of diabetes in ~10 million US children and adolescents younger than 18 years old, so it does not tell us how diagnoses of type 1 may be changing in adults” (diaTribe). 

It’s alarming for any disease to double its rate of incidence in 11 years, but what’s truly alarming is that one of the US’s major operating components of the Department of Health and Human Services, the CDC, gets diabetes wrong. In a major 34 year longitudinal study released in 2014, the CDC makes no distinction between type 1 and type 2 diabetes. Type 1 diabetes is an autoimmune disease, caused by the body attacking its own beta cells and stopping insulin production. Type 2 diabetes is when the body overproduces insulin, but insulin cannot enter the body’s cells, and this process is likely a product of lifestyle and genetics.

Since the CDC makes no distinction between type 1 and type 2 (again two separate and different diseases), it’s able to make the claim that diabetes is on the decline because 2009 saw a trending decrease in the incidence of type 2 diabetes. Here’s a link to the CDC’s study.

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graph from CDC’s study, “Annual Number (in Thousands) of New Cases of Diagnosed Diabetes Among Adults Aged 18-79 Years, United States, 1980-2014 source: CDC

This study has angered families affected by type 1 because the CDC illustrates a willful lack of understanding in two separate diseases. Additionally, and this is the point I find most frustrating, the CDC has no disease registry of type 1 diabetes.

Remember the reporting of the Ebola crisis that started in March 2014? The number of cases in specific countries was reported daily on multiple news outlets because Ebola was a reportable disease that had a disease registry. Here’s the CDC’s (in partnership with the World Health Organization) current cases. As of this writing, the cases were updated on January 6, 2016, yesterday.

I’m not comparing Ebola and type 1 diabetes; however, if the CDC has the ability to track a disease in distant third world countries and provide up to date current information to the public, certainly the CDC should be able to track the cases of type 1 diabetes within its own country.

Why are insurance companies the ones tracking type 1 diabetes in childhood? Is there a clear picture about type 1 diabetes in the uninsured population? If the CDC were tracking type 1 diabetes AND separating it from type 2, what would the graph for type 1 look like? Between 2002 and 2013 the blue lines would almost double in height. That’s certainly an increasing epidemic worth tracking, especially if type 1 diabetes has an environmental trigger.

Type 1 diabetes was once a rare childhood disease, but it’s increasingly less rare. With the incidence of type 1 diabetes increasing across the globe, but without numbers to study, a cause and cure will remain elusive.

The type 1 community is reacting and calling for change. Here are some actions you can take.

Living with type 1 diabetes presents enough hardships and frustrations, so the government organization whose mission includes,”increas[ing] the health security of our nation” should not be another frustration.

Diabetes & New Year’s Resolutions

I really enjoy the first week of the new year. The glut of the holidays is packed away, and while there’s reflection on the past, there’s more focus on the upcoming year. I work in academics, so the semester has yet to start, and our small town is usually covered in about a foot of snow. It’s quant, so this seems like the perfect time to reflect and plan. However, I’m not someone who makes New Year’s resolutions. In general, I believe that if there’s something I want to change or start, any random Thursday is just as good as New Year’s.

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a new year walk in the snow

Yet, type 1 diabetes has made me reconsider many assumptions and mores. The possible wisdom in establishing some resolutions at the start of the new year is just one of them. On her blog, Inspired by Isabella, T1D mom (and mother of triplets!) Kristina Dooley, wrote a post called “Losing Sight” that bravely discusses some of the biological stressors of being a T1D caretaker to a young child. Almost two years into the life of a d-mom and I can feel the effects of chronic sleep deprivation: foggy thinking, an increasing obsession with coffee, and higher stress levels.

Diabetes (both 1 and 2) is insidious for hundreds of reasons, but at the start of the new year, it seems that T1D is particularly cruel because there’s never a chance to regroup. Once that medical professional says “your child has type 1 diabetes” there’s no off-ramp. Instead, the person living with T1D, and to a smaller extent, his or her family, is running a marathon. For life.

We’ll look for the shady spots, like a three hour window with in-range steady blood sugars.

Maybe the start of 2016 is another good moment to rest. We don’t have much time before we’re back in the slog, so I think a few resolutions might help reframe our 2016 leg of T1D marathon: more protein, more sleep, and less worry about what’s beyond our control. On second thought, these are pretty lofty goals. I’ll settle for more sleep.

Diabetes, from Clinical to Personal

In this guest post, Rhonda Morgan, a registered nurse, describes how type 1 patients in diabetic ketoacidosis (DKA) and severe hypoglycemia were treated in the emergency department in the 1970s and 1980s. Rhonda’s understanding of type 1 diabetes changed in 2014, when the clinical became personal.

I began my career as a registered nurse in 1974, the summer I graduated college and passed my board exams. This was one of the sundry times there was a nursing shortage, so I started to work as a new graduate in a very busy emergency department (ED) of a 500+ bed hospital. It was grand. The ED affords ample opportunity to see just about everything. And we saw a lot of patients with diabetes in those days, primarily adults in DKA. Another frequently seen diabetic-related emergency was hypoglycemia (“insulin shock,” as it was known then), and these patients all too often presented to the ED, unconscious, with seizures, and with a very low blood glucose. Many doses of D50 (dextrose 50%) were administered empirically to known patients with T1D presenting with these symptoms. Likely no state of unconsciousness is as easily and instantly reversed. Occasionally, a child would present to the ED and be diagnosed with type 1, but children were always admitted to pediatrics, and never hung around in the ED for very long.

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Rhonda Morgan, RN in the ED, 1981, preparing an IV

The adult type 1 patient in DKA was one of my favorite patients to manage and care for in the ED, because the course was so dynamic, and one could see the favorable results of treatment over a short period of time. One of the really great ED physicians, with whom I worked for many years, would elect to keep these patients in the ED and treat them, as opposed to admitting them to the hospital, if they did not have insurance. This was much more financially feasible for the patient and family, plus the patient had constant care.

In those days, we had no bedside (point of care) blood glucose testing. We tested for glucose in the urine of our patients with diabetes using clinitest tablets. The clinitest method involved shaking a tablet out of the bottle into the test tube (because you could not touch the tablet with your fingers), adding 6 drops of urine and 10 drops of sterile water and waiting for the chemical reaction to occur. The contents of the test tube would fizz and generate heat, and then change color. After 30 seconds, one would compare the color of the liquid in the test tube to a color chart to determine the corresponding blood glucose. The test was very imprecise, but none the less we used this method of testing for glucose, along with blood tests that were sent to the lab, and took an hour or more to get the results.

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A few years later, test strips were available, but again, this method tested for glucose in urine and was not a direct or current measurement of blood glucose. DNA recombinant (Humalog/Novalog) insulins and basal insulins were not yet developed. We had regular insulin, NPH, Lente insulin, and ultra-Lente, the last two being longer-acting insulins. All were bovine origin.

Later in my career, I worked in critical care as a clinical specialist and helped institute computerized, and then later, web-based algorithms to manage hyperglycemia of critical illness, prevalent in both diabetic and non-diabetic patients in the ICU.

So, I have been around a lot of folks with diabetes. I have managed treatment and cared for of a lot of folks with diabetes in DKA, and in critical illness situations. However, I knew nothing about how to manage and oversee the maintenance of T1D until my grandson, Henry, was diagnosed with T1D at the age of 3.

Then, I saw the “other side” of diabetes— the personal side, not the clinical rescue, critical, immediate treatment regimen, but the everyday, every night, day-in, day-out routines that must be undertaken to keep him safe in the immediate, and to offer the best odds of avoiding the long term complications of diabetes. This side of diabetes management is just as critical as the side of diabetes care with which I was so familiar.

Our entire family had a learning curve that was fast paced. It was not easy, and it is not for the short term. It is for life. Henry was started on multiple daily injections at diagnosis in March 2014. Needless to say, this approach was filled with anxiety and unpleasantness for all. Thanks to his smart and advocating parents, he got his insulin pump and continuous glucose monitor in late May, just shy of 3 months into his life with diabetes. The pump ushered in a new learning curve, and the continuous glucose monitor gave us an eye on previously unseen data.

How I wish Henry did not have to live his life with diabetes, but he does.

I think back to 1974 and putting those 6 drops of urine in the test tube and feeling the warmth of the chemical reaction in my hand, and I contrast that to a direct blood glucose value we get multiple times daily in just seconds, CGM data transmitted over an iphone around the world, and insulin delivered with a pump, and I am confident Henry can have a happy, healthy productive life.

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Henry and his Nonna in 2014