Always Aware

November is Diabetes Awareness Month and organizations like Project Blue, the JDRF, and Beyond Type 1 use this month to educate and advocate, particularly through social media. The soaring cost of insulin, burnout, healthcare, misplaced jokes about sugar, and most importantly the warning signs of T1D are common topics.

In the past, I’ve used Diabetes Awareness Month to focus on caregiving and diabetes, as well as created indexes that attempt to quantify living with diabetes. Lately, I’ve been quietly thinking a lot about the psychosocial and mental health aspects of living with type 1. I’m certain it’s because as Henry becomes older, he’s becoming more aware of what it means to live with diabetes, and perhaps at seven, he already understands this better than I do. Recently, he told me that since he’s seven he’s old enough to help watch his blood sugar overnight and asked to keep the CGM on his nightstand.

Earlier this fall,  his class talked about fire safety, and through our local fire department, families were encouraged to discuss a fire safety plan: “Every second counts. Plan two ways out.” Henry has been adamant that our family plan two ways out and discuss our fire safety plan, so last night at dinner we did.

Henry asked, “Who will bring the cell phone to call for help?”

I assured him papa or I would bring our phone.

Then he asked, “Who will bring my diabetes bag?”

Taking a deep breath in—in wonder that he already thought of this well before me—I assured him that papa or I would bring his diabetes bag.

For more than half his life, I’ve been playing the role of his pancreas, and I think I’m pretty good at planning and reacting to most things diabetes, but what I didn’t know is how always aware he was and is and will be.

 

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In Search of Simple

A few years ago, I used a serving spoon instead of measuring cups to plate dinner. If I looked at a nutrition label, it was with passing interest. I left the house with nothing but keys, wallet, and phone.

Now, leaving the house requires a search and preparation of the d-bag, making sure it contains glucagon, meter, glucose tabs, enough test strips, lancet, CGM receiver, checking my purse for back up rescue sugar, and glancing at a blood sugar. I’m the lady blocking the grocery store aisle, squinting at nutrition labels. I weigh and portion Henry’s lunch, and include the carb counts in a note for the school nurse. Twenty minutes before eating, (you know that really calm time right before dinner when the kids are ravenous and you’re trying to cook and answer homework questions at the same time) I have to know how much and what Henry will eat, count the carbs, check his blood sugar and give insulin. When shopping, I have to pick out clothes that will accommodate the medical gear he wears. The list goes on…

Having diabetes takes away many simplicities I once took for granted, like packing a school lunch. During a particularly harried morning, I remembered the Leaf  & Love Lemonades that I won from their Instagram giveaway. I threw one in his lunchbox and a wave of simple joy washed over me. It reminded of life before diabetes, when I could just hand my son food without solving complex math equations or worrying about the effect it would have on his immediate and long term health.

This d-life is hard, but it certainly allows for celebration of the simple, like an in range blood sugar or an awesome lunch.


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Rachel & Coco Go To Kindergarten

I was middle school dance nervous the night before visiting my son’s Kindergarten classroom. The plan was for me to read Go, Team Coco!, a book that helps educate young children about type 1 diabetes, to Henry’s class.

I wasn’t nervous about being in a room full of Kindergartners, but I was nervous that after reading a book about diabetes, that some kid would tell Henry what he could or couldn’t eat, would point at his medical devices, that later, in fourth grade, kids might make fun of him, not want to pick him for sports, not invite him to their houses or birthday parties, and hopefully much, much later, not want to date him, or marry him, or hire him, or…

On our walk to school, Henry was excited and asked if I could stay all day. His big sister wanted to know if I could read to her class about diabetes. Truthfully, I didn’t want to read about diabetes at all. I didn’t want to put any fuel on fears for the future, but I sat down at story time and told the class, “One day when Henry was three-years-old he got very sick, but then he got better. He wears a pump and CGM to help us keep him healthy,” and a strange movement caught my eye from the center of the rug, where the kids were seated.

I saw Henry reach into his pocket to get out his pump and show the class. His teacher suggested that he come and sit next to me. With a smile, he joined me in the front of the room. He showed them his pump, (and it’s a really cool pump, by the way, sometimes it turns into a pump laser or a really, really bad disco laser, so Henry says). I read some of the story, and Henry explained what it was like to feel low, when Coco was low. We finished the book and unprompted, the kids all chanted, “Go Team Coco” with me.

And then the hands shot up. I learned which kids have asthma, another kid described how his grandma checks her blood sugar, another kid’s sibling has type 1, another grandparent has diabetes, and another. For a strange moment, diabetes unified a room of Kindergartners, who talked so eagerly, wanting to be part of something by sharing their experience.

 

As Henry lives with diabetes, I know all his peers won’t accept him as easily as this room full of Kindergartners, but many will.

I tucked the book back in my bag for the short walk home, and it occurred to me that since diabetes takes so much from us there’s no need for me to build straw houses of fear that I’m afraid will burn at some future time. Sometimes, it’s me, and not diabetes that’s the gasoline. In this present moment, none of my fears mattered. My son was a few blocks away, in a room full of curious friends, wearing an awesome pump laser.

 

 

When Type 1 Knocks on Preschool’s Door

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who share their experiences of learning about Type 1 and managing it in a preschool classroom. “When Type 1 Knocks on Preschool’s Door” is by Jessie Blohm.


It has been two years since diabetes knocked on the classroom door. Two years ago we were, admittedly, afraid and unknowledgeable. Two years ago, I could have told you the difference between Type 1 and Type 2 only by way of saying that Type 2 was the kind that elderly people can develop and a result of the obesity epidemic. Other than that, I had no idea what the difference was or how much we would learn in two short years.

Insulin, units, blood glucose (BG), meter, lancet, pump, bolus, combo bolus, pre-bolus, etc…the language alone was enough to make my head spin. How were we going to learn all of this in one week, so that we could keep Henry safe at school? It didn’t matter how, it just mattered that we would. A couple evenings of reading The First Book for Understanding Diabetes and a crash course in testing with the meter and we were on our way. Well, not quite that easily, but it did happen that quickly.

I believe that there were 4 key factors that made Henry’s time in our classroom so successful and relatively stress free for his parents.

#1. Caring and attentive parents

Henry’s parents were willing to meet with teachers before the start of school with step by step handouts, powerpoint, scales, cheat sheets— anything and everything they could think of to inform two lead teachers and a handful of college students on how to best care for their son. Rachel and Matt were able to answer questions when we had them, walk us through as new situations like priming the pump or delivering a combo bolus arose. They stressed the importance of realizing that there was no “normal” situation when “managing” diabetes and that so many factors play in to Henry’s numbers on any given day. They gave us a list of our typical snack foods as well as the portion sizes and carb counts, taught us how to weigh foods for lunch, and count carbs in each serving size. We used those cheat sheets religiously and by the end, we were able to take a cooking activity for the classroom, modify the ingredients slightly, and figure out how many carbs were in it so that we could give Henry the correct amount of insulin and most importantly, that he was able to participate in the same activity that the rest of the children were.

#2. Lots of checking…and double checking, and sometimes even triple checking

Before going outside for large motor, “Henry, let’s check you.” While at group, “Anna, will you check the CGM?” While getting ready for lunchtime, “Lexie, will you text Rachel and Matt to check if that amount of insulin sounds correct, it seems high.” Preparing for a center time cooking activity, “Double check my math on this portion size for the cooking activity, do you get the same numbers that I do?” The CGM needs calibrated, “Two different checks (pokes) this time, Henry.” In the beginning, this was a complete tag team effort between us as co-teachers, standing shoulder to shoulder at the counter as we figured the carbs for his lunch/snack/activity. After two years, it was like a well choreographed dance, we were able to have a quick conversation about his numbers that day, make a guess on how lunch/snack/activity would effect his blood glucose, and move between the different roles as lead teacher/lead caregiver with ease….but it took a lot of “checks” to get us there.

#3. Trust

It had to have taken an amazing amount of trust on Henry’s parents behalf to hand over his backpack each day and trust that we were going to stay on top of his numbers, catching any highs or lows from a new breakfast food, our lunch menu, and his activity level. Trust in our student staff and their training when we were out of the room or in a meeting. Trust in the CGM in order to avoid an unnecessary finger poke. Trust in the Dexcom app and knowing that there were 4 sets of eyes randomly checking his numbers throughout the day and sending a precautionary text to whomever was with Henry (teacher/staff), just in case they hadn’t caught it.

#4. Acceptance

In our classroom, we call everyone “friends” and we work hard to promote acceptance, resilience, and kindness. After diabetes knocked on the classroom door, we had a new topic to cover. Sugar. Much like we begin every school year creating that classroom community, we hit all of our usual likes/dislikes, how we all are the same and how we are different, etc. It was decided that we all liked sweet treats and we all understood that too many sweet treats would give us a tummy ache. However, for Henry, his body needed help with the sugar and he had to wear the pump so that it would keep giving him medicine in order to be safe. The children were so accepting of this! They would occasionally take an interest in watching us check Henry’s BG, ask an occasional question, or tell us they heard a beep from the pump, but more often than not, they didn’t even notice anything different! Henry was resilient, could go wash his hands, check his BG quickly, and return to his play with little interference, it was just accepted as part of the classroom routine and community. In all honesty, acceptance, resilience, and kindness are probably the best qualities in young children, and the rest of the class made it easy. I only hope and pray that the rest of Henry’s years of school are equally as accepting and kind to him.

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Jessie and Henry

Jessie Blohm is a teacher and a mother, holding her Masters Degree in Early Childhood Education from the University of Northern Iowa, while earning her Mother of 3 degree at home in her partially remodeled farmhouse in Reinbeck, IA. She lets her kids run barefoot and would rather pick weeds in the garden and drive kids to soccer practice than cook any day.

2nd Diaversary: 731 Days of Living with T1D

I like my birthday less than I used to. Of course it still happily marks another year of life to celebrate with friends and family, but March 5th also marks the last day my son would ever not have type 1 diabetes. On March 6, 2016, my son has been living with (diagnosed) T1D for 731 days (there’s a leap year in there), roughly 37% of his life.

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Semisweet Soap (0 carbs)

We haven’t figured out how to mark or celebrate his diaversary, a neologism for the anniversary of a diabetes diagnosis. I think we’ll wait for Henry to take the lead on this. However, I’ve been reflecting on this upcoming date for a few weeks now. Moments like this are mile-markers because they disrupt the routine of counting carbs, insulin delivery, and correcting highs and lows. If I think about the preponderance of diabetes care all at once, it’s overwhelming, so the task-to-task perspective allows me to get up each day, put my boots on, and do it all again. Yet, around these mile-marker moments, I usually peek out the window at the vast appalling and inspiring mountain range that is T1D management.

On March 1st, I recorded all my actions related to T1D care. Here’s one day of T1D care. It’s only one day. Some days are better. Some days are worse. We’ll do it all again tomorrow.


KEY

basal= background insulin being delivered by pump

bolus= a larger amount of insluin delivered at meal and snack to cover carbs

BG= blood glucose

CGM= continuous glucose monitor, provides an estimate of Henry’s blood glucose every 5 minutes

Dexcom Share allows us to see blood glucose values on our phones

ezBG= pump function calculates how much insulin to deliver to correct a high BG

IOB= insulin on board, the amount of insulin that has been administered and is still circulating


12:03 a.m.- check BG by blood, 74 with an arrow down to the side, half a juice box

2:00 a.m. – wake up to alarm, check BG on CGM, 147 with an arrow straight across go back to sleep

5:00 a.m.- wake up to alarm, check BG on CGM, 220 with an arrow straight across, so check BG by blood, it’s really 309, give 1.25 units of insulin, go back to sleep

7:00 a.m.- wake up to alarm, check BG on CGM, 137 with an arrow down to the side, so I get ready for work

7:30 a.m.- check BG by blood, 130, while Henry is still asleep, prebolus 1.5 units of insulin for a breakfast of 25 carbs

7:35 a.m.- help Henry get dressed so that the pump and CGM sites stay secure

7:55 a.m.- Henry eats breakfast, a low carb, sugar free muffin and a scrambled egg with cheese

8:35 a.m.- check BG on CGM 107 down to the side, get d-bag ready for school

9:05 a.m.- drop Henry off at preschool, get CGM on Wi-Fi, check BG by blood, 210, give .15 units of insulin to correct high

9:15 a.m.- listen to a diabetes podcast during morning email and class preparation

10:08 a.m.- text from Henry’s preschool teacher/s: Did another ezBG, I look at BG remotely, 320

10:59 a.m.- right before teaching, look at BG remotely, still 320

11:17 a.m.-text from Henry’s preschool teacher/s: We did another ezBG at 10:30 and it gave another .3. He had 1.07 IOB at the time. 

11:45 a.m.- Husband calls during class, saying he went to check on Henry, who has large ketones. Pump said to give 6.6, but this would be way beyond the most insulin Henry’s ever had at once, and it made my husband nervous, so he gave Henry 5.6 units of insulin to correct for large ketones and cover his lunch of grilled cheese and tomato soup. 5.6 is the second highest amount of insulin Henry’s ever had on board.

12:01 p.m.-look at BG remotely, 329 with an arrow up at the side

12:15 p.m.- listen to voicemail from drugstore about prescription problem with test strips

12:45 p.m.- while on a way to a meeting, read text from husband: I called the school and told them to go ahead and give the additional unit I was worried about, look at BG remotely, 363 with an arrow up at the side

1:15 p.m.- during meeting, unsuccessfully try not to think of Henry’s ketones and blood sugar

1:53 p.m.- text from Henry’s preschool teacher/s: We gave another unit and are continuing to push water. Will have cheese stick and beef stick for snack, husband texts back and asks that Henry be given 1 additional unit of insulin to help clear ketones.

2:30 p.m.- look at BG remotely, 263 with an arrow straight across

2:33 p.m.- look at BG remotely, 260 with an arrow straight across

2:38 p.m.- look at BG remotely, 260 with an arrow straight across, realize I have to stop obsessing and get some work done

3:08 p.m.- look at BG remotely, 141 with double arrows down, which means Henry’s BG is falling faster than 3mg/dL per minute, text to his teacher/s: Now he’s falling fast! What’s his real BG and how much IOB? 

3:16 p.m.- look at BG remotely, 111 with double arrows down, call classroom and talk with student worker who tells me that IOB is 1.16, I tell her to give Henry 2 glucose tabs, text husband this information

3:25 p.m.-look at BG remotely, 95 with double arrows down, I tell myself I am a logical person, that the sugar will do its job and the CGM is lagging, so he’s probably leveling off, not spiraling down

3:29 p.m.- text from Henry’s preschool teacher/s: 97 and .92 IOB, gave two tabs 15 min. ago, CGM says 84 with double arrows down

3:58 p.m.- look at BG remotely, NO DATA

4:16 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across

4:31 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across, then Henry walks through the door with his papa, who said his BG by blood was 112

4:46 p.m-. my phone buzzes with a Dexcom alert, I don’t check, knowing it’s still catching up form the fast drop

5:40 p.m.- check BG by blood, 95 and prebolus 1.4 units of insulin for a dinner of 40 carbs

6:10 p.m.- during dinner my phone buzzes with a Dexcom alert, CGM says BG is 74 straight across

7:00 p.m.- check BG on CGM, 121, an arrow straight across

7:28 p.m. – help Henry change out of his clothes and into his pajamas to preserve pump and CGM sites

7:32 p.m.- check BG by blood, 111, give .55 units for a high protein bedtime snack of 11 carbs

7:40 p.m.- add some new basal times and programs to avoid nighttime highs, which have been more or less constant for the past few days

7:56 p.m.- check BG on CGM, 160, an arrow straight up

8:56 p.m.- check BG on CGM, 157, an arrow straight across

9:32 p.m.- check BG on CGM, 134, an arrow straight across

9:46 p.m.- silence reminder alarm from pump to check BG 2 hours after insulin delivery

10:10 p.m.- check BG on CGM, 181, an arrow straight across

10:39 p.m.- check BG on CGM, 177, an arrow straight across, decide to check BG by blood, 209, give .7 units of insulin

11:32 p.m.- check BG on CGM, 168, an arrow straight across

11:42 p.m.- check BG on CGM, 158, an arrow straight across, set alarm for 12:40 a.m., 3:00 a.m., and 6:00 a.m.

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today 

 

 

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, 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.

clinitest

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

99 Diabetes Problems and Breakfast Is One Of Them

Having type 1 diabetes means following a pattern of exact measurements and calculations, all the while knowing that a pattern or desired result could likely not be the outcome. One day, Henry can run around like a madman at the playground and then come home to compete is some serious sofa jumping, and sometimes this physical activity will cause him to have a low blood sugar, but other times his blood sugar can go up.

However, there is a constant calculation in type 1, a perfect diabetes storm: food, stress, and biology, otherwise known as breakfast.

Food

Common breakfast foods such as sugary cereals, pancakes, waffles, and bagels are refined carbs that jack up blood sugars. The quickest way to see two arrows up (which indicates a rapidly rising blood glucose) on a CGM is to eat these common, simple carb-rich breakfasts foods.

Stress

I’m always confused by those scenes on T.V. shows and movies where families sit down in work clothes to pitchers of orange juice, bacon, and omelets before work and school. Really? Does this really happen? Really? A montage of a morning scenes at my house involves waking up two young kids, brushing hair and eating at the same time, putting at least one article of clothing on backwards, forgetting something, the kids playing a last minute game of school with stuffed animals just minutes before they go to their actual school. And diabetes care.

Biology

Breakfast is literally breaking a fast. When we go a long time without food, our body makes its own energy through glucoseneogensis, which is exactly what the word sounds like: the creation of new glucose, which is done from glycogen stores in the liver. In someone without T1D the beta cells of the pancreas send a message to the alpha cells of the pancreas to start the process of glucoseneogensis, which prevents our blood sugar from dropping too low, or around 70, in long time periods without food, like overnight or interminable work meetings.

In someone with T1D, the beta cells are non-functioning and therefore can’t communicate with the alpha cells. So the result of this is sporadic and unreliable glucoseneogensis. If endogenous (originating inside the body) glucose is being circulated, it takes exogenous (coming from outside the body) insulin to bring a blood glucose back in range. People with T1D are taught to account for exogenous glucose (glucose coming from food), but endogenous glucose is a crapshoot.

I don’t have type 1, and I’ve worn my son’s continuos glucose monitor on occasion. In the picture below, you can see a CGM on the top, which is my son’s. He woke up with a high blood glucose just below 200, and experienced a quick rise from the carbs he ate for breakfast. I woke with a blood sugar around 80, and it rose after I got up, cooked, and got the kids ready. The arrow points to where my blood sugar rose because of glucoseneogensis, but my endogenous insulin production quickly brought my level back down. The rising line on my son’s CGM shows just how difficult it is to get biology and math to line up.

morning glucose

Top CGM: T1D with high waking BG post breakfast with insulin and carbs, Bottom CGM: non T1D with waking BG around 80 and glucoseneogensis

Here’s one of the great challenges of diabetes care: a person caring for type 1 diabetes has to make decisions that simultaneously require anticipation and reaction. Every morning, we have to react to the waking glucose value and anticipate the food, activity, emotion, and invisible metabolic processes that Henry will encounter during his day.

It’s taken a while, but here’s how we’re navigating the perfect storm of diabetes and breakfast.

Food

Now that we’re paying attention to food, it’s really obvious that everyone should not eat some things. On occasion, I’ve worn my son’s CGM, and I can watch my non T1D blood sugar rise after eating a few crackers or a bit of bread. When I eat a salad or lean protein, there’s no rise in the line that indicates my blood sugar. It’s an easy conclusion: some foods, usually shelf-stable refined carbs, should not regularly be eaten.

For breakfast we try to balance our son’s plate with a fat, a protein, and carb. A typical breakfast for him might be something like an egg sandwich (check out this low carb bread) with cheese and an apple, or a wholegrain waffle with sugar-free syrup, sausage, and an egg.

Stress

I got nothing here. Diabetes makes everything harder. In related news,  (see above) we’ve opened a casual breakfast diner at our place.

Biology

Diabetes brings consistent inconsistencies. This morning Henry’s waking blood sugar was 94. Yesterday, it was 186. His blood sugar will be inconsistent, but we can consistently pre-bolus. Lately, while our son is still waking up, often in bed, or as part of getting dressed, we pre-bolus his insulin for breakfast. As his body goes through the metabolic process of waking up, and we complete the morning tasks of getting ready, this is a great time to pre-bolus and let the insulin’s onset of action time line up better with the carbs he’ll be eating in about 15-20 minutes.

With all this science, research, and effort, here’s yesterday’s two-hour post breakfast data.

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Looks like we’ll be pre-bolusing and serving up eggs over easy at Casa Del Semisweet from now on.


 

Announcing our first GIVE AWAY!

You’re invited to comment and with a recipe, link, or breakfast idea that’s blood sugar friendly. I’ll leave a few ideas and links in the comments to some breakfast foods we’ve been trying. If you post your comment by December 31st, a winner, at random, will be selected to receive a bar of handmade Semisweet Soap. I’ll contact the winner for shipping information, and we only ship within the U.S.

Team Pancreas: Caregivers Matt & Rachel

How would you describe your child’s condition?

Matt: Henry has type 1 diabetes. This means that his entire life is centered around the fact that his body does not produce the insulin he needs to process glucose, so we check his blood sugar about ten times a day by poking a small needle into his finger and adding that drop of blood onto a meter that tells us what his BG (blood glucose) is. Depending on what the number is, we give him insulin, sugar, or wait. This means that we deal with low blood sugars, which are potentially, immediately, fatal; high blood sugars, which can have drastic, long-term consequences for his life; or “normal” blood sugars, which help keep him healthy. We get up every two hours every night to help maintain his blood glucose. Two weeks ago, Henry looked at me and said, “Diabetes is a hard life.” I agree.

Rachel: Our son, Henry, has an autoimmune disease, type 1 diabetes. Something triggered his beta cells to stop producing insulin, so he must take subcutaneous insulin for the rest of his life, test his blood glucose 8-12 times a day and always account for the carbs he eats with insulin. There’s never a break from type 1 diabetes, because the person with diabetes or the person’s caregiver/s is trying to replicate a job the pancreas once did.

What care for your child is required, and how do you and your partner divide this care?

Matt: We make sure that he gets enough insulin to cover the carbs (sugars) he eats so that his blood glucose does not get too high and cause damage to his organ systems. We also make sure that his BG does not drop to a low level that could result in seizure or death. We count all of the carbs he eats and program his (miraculous) insulin pump to keep him in balance. We also change his pump site every two to three days, as well as his constant glucose monitor (CGM), another amazing device that keeps us updated on an estimate of his BG. Rachel definitively manages the difficult logistics of this care. She deals with insurance companies, refills at the pharmacy, and talking to the reps at Animas (insulin pump) and Dexcom (CGM).

Rachel and I both deal with the daily stresses of handling diabetes. We both count carbs, take BG readings, get up in the middle of the night and evenly split the duties of changing Henry’s pump and CGM sites. Henry has developed a pretty nasty allergy to the tape that holds both of these machines onto his skin, so we have to take a lot of precautions to make sure that his exposure to them is minimized. Rachel reached out to the diabetes online community and found people who helped us come up with solutions when our docs had basically given up and asked us to go to multiple daily injections.

The best balance that we have, in terms of day-to-day care, is that Rachel is very good at keeping track of what Henry needs medically and practically; she amazes me with how much she has learned about diabetes and its care—  and I am helpful in the ways that I try to create some distance from a life with diabetes and a “normal” life for Henry. I’m probably more likely to encourage us to get ice cream or wait to change a site— this balance only functions because of how hard Rachel works.

Rachel: In the wise words of Kenny Rogers, “Know when to hold ‘em, /  Know when to fold ‘em / Know when to walk away / Know when to run.” I know when to hold ‘em, which comes in handy with the rigor and attention counting carbs and dosing insulin requires. Matt knows when to fold ‘em and let Henry live the life of a five year old with birthday parties, extra ice cream, and a day longer with a site. Henry will need both of these skills as he learns to live and manage his diabetes. Balancing diabetes is an art and a science, so I’m the science while Matt’s the art. Matt and I both know when to walk or  run away from a negative comment, failing site, or excessive carb scene.

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Team Pancreas

How has being a caregiver changed your relationship?

Matt: I don’t think it’s changed us fundamentally. We don’t always agree about everything to do with Henry, but we always talk about why we think a certain action is best in the certain moment. Ultimately, we are both focused on making sure that Henry is safe and protected. Chronic conditions are definitely an added stressor, and I’m sure that we get a little snappier at 3:00 in the morning, but we are both committed to each other and to caring for Henry.

Rachel: A lot, but a little. A lot because we are now caregivers for our son, who has a chronic condition, but not a lot because we decided to become partners and then parents together long before diabetes entered our lives, so we’ve mostly figured out how to handle stress and difficulty. A day to day difference is struggling with time, because everyday actions, such as preparing for a trip or eating at a restaurant, are now more complex and require discussion, preparation, and planning. We have to depend on each other more.  

Describe a caregiver technique you and your partner do differently.

Rachel: We both do really hard things. For the past 18 months I’ve put in Henry’s pump site, which feels like I’m stabbing him with a giant needle. Henry anticipates site changes, and it’s just awful to know that I’m causing my child physical pain, even if it’s for treatment. When Henry asks something like, “Will I have diabetes when I’m a grown up?” Matt can answer this question honestly and have Henry laughing within a few minutes, whereas I have to leave the room because I don’t trust myself to answer without getting choked up.

Matt: We have split things up, but we talk or text at least two or three times a day about his care when we are both at work. Changing the site of Henry’s pump is stressful because of the precautions we have to take with his skin and because he dreads them. We put Lidocaine on his skin to decrease the pain but they still worry him. I prep the area on his skin and get the pump primed to administer insulin and hold him while Rachel actually inserts the pump.

In twenty words or less, describe your partner’s caregiving superpower.

Rachel: Matt’s superpower is levity that inspires patience and laughter, needed in the shadow of a wrong number at the right moment.

Matt: Rachel’s superpower is her love for Henry and how this gives her a laser-like focus on keeping him alive.

2015 Type 1 Diabetes Index

November 14th is World Diabetes Day. November 14th marks the 618th day our family has been living with type 1 diabetes. To be sure, it’s difficult to measure or assess the emotional toll of living with diabetes, but there are ways we can measure the impact of living with type 1 diabetes. Here’s a look at Henry’s 2015 type 1 diabetes index. At the end of the blog, there’s a video where some of these numbers are juxtaposed to our everyday life, creating just a glimpse into the emotional side of living with type 1 diabetes.

Number of days Henry’s been living with type 1 diabetes: 618

Number of vials of insulin Henry’s used since diagnosis: 26

Estimated cost of 100 units of recombinant insulin without insurance coverage: $215

Range of a normal blood glucose: 80-120

Number of people living in the U.S. with type 1: 1,250,000

Estimated number of finger pokes Henry has had to check his blood glucose: 7,400

Number of insulin pump site changes Henry has had: 280

Estimated cost of an insulin pump without insurance: $7,000

Estimated yearly cost of pump supplies: $1,500

Chance of developing T1D if no relatives have the disease: .4%

Chance of developing T1D if a first degree relative has T1D: 10-20%

Average number of years T1D takes off of a male and female life (respectively): 11, 13

Number of site changes Henry’s had for his CGM (continuos glucose monitor): 83

Estimated yearly costs of a CGM without insurance: $2,800

Number diabetes related check-ups Henry’s had: 9

Number of miles on the road to Henry’s diabetes appointments: 1,786

Range of non-diabetic hemoglobin A1C: 4-5.6

Range of Henry’s hemoglobin A1C’s since diagnosis: 7.5, 8.1, 7.2, 7.3, 7.0, 7.5, 7.1

Chance someone will die of T1D within 25 years of diagnosis: 7%

Number of Henry’s hospitalizations and emergency room visits related to T1D: 5

Number of nights of uninterrupted sleep in Henry’s house since diagnosis: 0