Month: August 2015

A Week In Review: Diabetes’ First Week at Preschool

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It’s Sunday night. With only one work and school week behind us, the next week and the one after that loom. Last week was mixed with some new ratios (adjusting how much insulin is given for a set amount of carbs), a couple of lows, technology failures, and an embarrassing encounter with my neighbor. Here are some of the highlights mixed with a few tales of low.

Monday

Having a continuous blood glucose monitor (CGM) is like having a porthole into this strange metabolic dance between insulin, carbs, exercise, and stress. After Henry’s first day back at preschool it wasn’t his sweat soaked hair or his teachers remarking how much more “outgoing” he is this year, as it was the CGM data that told me he was a wild man. He was really, really glad to be back at school, exerting lots of energy, which lowered his blood sugar. For dinner he ate a cup and a half of pasta and was double arrows down with a reading of 135 an hour after dinner. By blood he was 80. His blood glucose never rose above 160 the entire night. If only first days back could be bottled and used with insulin to help control high blood sugars.

Tuesday

My husband teaches an 8am class, so on Tuesdays and Thursdays I get the kids up and off to school on my own. I woke to Henry’s pump beeping because the battery was dying. Here’s the short of it: a battery change requires priming, which means a new site. It still takes two adults to help with Henry’s site changes, so I cheated and changed the battery with a new cartridge. I did this in the dark, not wanting to wake up Henry, and in this great plan, I didn’t realize I’d put the battery in backwards. Now the battery cap would not come off and the pump wouldn’t turn on. No matter how hard I tried, I could not unscrew the cap. I began looking out my backdoor, wondering which neighbor’s door I could knock on before 8am and ask for “the man of the house” to help unscrew the battery cap from an insulin pump. Thankfully, I caught a neighbor on his way to work. With my wet hair still in a towel and in bare feet, I set feminism back a few years, but Henry got insulin and everyone got to work and school on time.

Wednesday

I know only about 10-20% of people with type 1 diabetes use a continuous glucose monitor (CGM), but based on the hold time with Dexcom, I’d say market penetration is closer to 90%.

Thursday

At preschool drop off Henry was 111 with double arrows down on the CGM, but he was really 60 by blood. He still had over a unit of insulin on board. I stayed during group time to correct the hypo. One juice box and 4 glucose tabs later his numbers were moving in the right direction. This was when I realized preschool has ushered in a new activity level, so while sitting criss-cross applesauce during story time, I increased the insulin to carb ratio. The further those dots (a glucose reading sent out every five minutes) are from each other, the faster things are happening.

arrows on CGM

Friday

There was a light spirit in the air; as a family, we were closing the first week and moving toward the weekend. Over breakfast and out of the blue Henry asked, “Will I always have diabetes?” Henry’s asked this question before, and we’ve always answered in the affirmative. Matt, Henry’s father, took a deep breath and said, “Yes.” 

This sat with all of us for a moment. Then Matt added, “But people are working really hard to create new things to make diabetes easier. It will get easier.”

It will get easier. We’re ready for the second week.

Thirteen Ways of Looking at Dexcom Share Data

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Wallace Stevens, an American poet, wrote complex verse that uses precisely abstract language to scuttle between imagination and reality.  Check out his poem, “Thirteen Ways of Looking at a Blackbird” and “The Snowman.”

We’re three days into the semester, so I’m back in the classroom and Henry is in preschool. There are many moments where my thoughts zoom from reality to imagination before and after I look at Henry’s blood sugar on my Dexcom Follow App. I know he is being well cared for, but there’s always the reality of having type 1 diabetes. Here’s the thing: if you have type 1 diabetes, this means within a 24 hour period it will be difficult, and unlikely, to keep a blood sugar between 90-180. And if a blood sugar happens to remain within the 90-180 range, it is a good moment, but it’s only a moment before the insulin keeps working after the carb is digested, or an emotion elevates a blood sugar, or a correctly counted carb misaligns with correctly dosed insulin and the number soars.

If you’re not familiar with type 1 diabetes, here’s a quick primer. A generally safe blood glucose range (for the pediatric person with diabetes) is 90-200. Below 80 is considered “low” or hypoglycemic, and requires immediate treatment because the immediate consequences are seizure, unconsciousness, and worst of all, death. Above 240, or “high,” hyperglycemia, could result in ketones, and in the short term result in DKA or Diabetic Ketoacidosis, which (similar to hypoglycemia), could result in a coma and death. In the long term, blood sugars above 150 could result in complications to the eyes, kidneys, heart, brain, and feet. 

So, a caregiver or person with diabetes is always walking this impossible tightrope of insulin, carbs, emotions; trading now for later. There’s plenty of room to imagine, second guess, or worry. 

Here’s thirteen ways of looking at Dexcom Share data, with apologies to Wallace Stevens. The images come from one 24 hour period.

IMG_6645

1. Among too many highs from lows.

2. A lesson about banana muffins,

of a mind to never make these again.

3. Pantomime of pancreas is a

slapstick impossibility.

IMG_6639

4. The number is not one, but

frighteningly close. Mother + child

+ pump + glucose tabs = not pancreas

5. The moment before a gut punch

or just after.

6. The line traced in line,

the indecipherable cause.

IMG_6652

7. What do you imagine?

8. Lucid, inescapable numbers?

9. Illusion of perspective—

flown, offline, out of sight?

IMG_6654

10. Euphony, at a line,

a bird to horizon.

11. Not mostly, but once,

a fear usually pierces.

Even when it’s mistook.

12. The insulin or sugar is moving.

IMG_6664

13. It was all night into morning.

It was no sleep into half-sleep.

T1D Helicopter Parents Unite!

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I used to teach English at a distinguished college preparatory high school in Los Angeles. Occasionally, the faculty would bemoan the “helicopter parent” after an exhausting and ghastly encounter. For example, a father told me his son, a sophomore in my composition class, could not complete the homework because the son was sad his pet goldfish died. Another mother drove her son’s homework to school after she completed it for him. At my classroom door, in front of his class, she explained he was too excited to do his homework last night after he found out he made the freshman football team.

Even helicopter parents understand that if they always tie their child’s shoe, the child will never learn to tie a shoe. But parenting is a complicated paradox: as a parent, my job is to make myself obsolete. The whole business of parenting is weaning. The process of weaning and independence is  easy to see with young children, when desire precedes ability, and they want to pour the milk or pick out their own clothes. After many days and years of scaffolding independence the hope is my children will get an education and job, be able manage money, make decisions to safeguard their health, find people that make them happy, and join communities.

That’s how the whole plan is supposed to proceed, but the plan requires revision when a chronic disease enters the scenario. Our four year old has type 1 diabetes. Now our job is to aim for all the aforementioned things, but also to daily administer a drug, insulin, which preserves his life, but could take it. In a few years, we’ll have to teach him how to deliver this same drug. We have to teach him how to wear medical equipment (Animas pump and Dexcom) on his body 24 hours a day and how to take care of this equipment. We’ll have to teach him how to heal and advocate for himself when he encounters unkind or ignorant people.

School is starting, so a parade of parents are meeting with educators and administrators about 504 plans, and educating staff on caring for a student with T1D. In her article, “What It’s Really Like To Raise A Child With Diabetes” on The Huffington Post, Lisa Gastaldo explains some of the fears and realities of diabetes care from a parent’s perspective, as well as her history of working well with schools and doctors. I think it’s a great read to pass along to teachers and family members who may not recognize the trials of living with diabetes.

Even people who are in the diabetes community debate when and what a parent’s role in T1D care should be. As CGM in the Cloud and Nightscout emerged and engaged in important debate with Dexcom over moving to an FDA approved platform that enabled sharing of CGM data, people in the diabetes care industry predicted that the helicopter parents of T1D children would be distracted and consumed by the data. We’ve had Dexcom share since June, and have found the opposite to be true. Rather than wondering what our son’s blood glucose is, and texting or calling to find out, we look at the number and move on. We’ve been able to leave our son with family members for the first time since diagnosis. Just this week, both of Henry’s preschool teachers downloaded the app on their phones and marveled at how this continuos stream of information would make monitoring and care easier in the classroom.

Dexcom Share data on follower phone

Dexcom Share data on follower phone

My job is primarily to be a parent, but as I watch my four year old son struggle to put on a pair of pants while holding an insulin pump, I realize my other more arduous job is to be a parent to a person with type 1 diabetes. How long do I watch him try to untangle the tubing from his pants before I step in? To stall, I play a trick on myself and say this is like any other challenge every other kid faces, right? I tell myself only the scenario is different, but then Henry looks at me in frustration. He asks for help, and I can see on his face that he knows this struggle is different, more intricate and undue. There’s no need to say anything in this moment that requires action. Instead, we sit down on the floor, where he can place his pump, and find a new way to put on pants.

Wanda’s Diagnosis Story

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Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing the diagnosis story of someone who’s lived with T1D for 53 years. Here’s Wanda’s Diagnosis Story in her own words.

Wanda, diagnosed at age 12, December 19, 1962

About two weeks before Christmas in 1962 I developed a tremendous thirst and along with it, numerous trips to the toilet to pee. This was not immediately noticeable to my mom, but after a week of this, I required a parental note so that I could be excused from my class to go the bathroom, which was an embarrassment for a twelve year old.

My mom’s initial thinking was that I had a bladder infection, so thankfully she set up an appointment with our family doctor for the following week. By the time of the appointment, I was drinking (and peeing) over 1 gallon of water, plus other fluids, each day. I had a huge appetite, but was listless and quickly losing weight, almost 20 pounds in 2 weeks. Our doctor did a quick urine test in his office and diagnosed me with type 1 diabetes, which was called Sugar Diabetes at the time. I was twelve years old and in Grade 7 when I was diagnosed with type 1 diabetes.

I was admitted into the children’s ward of the local hospital and spent one month in the hospital. I remember being worried I would miss Christmas, but the doctor said I could go home for Christmas day if I returned in the evening, which is what we did. I was in hospital for about 4 weeks as I learned the complexities of diabetes care. They also figured out how much insulin I would require to manage each day. Glucose testing was mainly done with Eli Lilly urine testing strips, which certainly weren’t as accurate, but gave you idea if you were in trouble. There was no sliding scale, and pumps weren’t yet invented. I measured food in “exchanges” and ate the same amount every day, so 1 ounce of meat was 1 meat exchange a slice of bread was a bread exchange, etc.

Wanda 1 year after diagnosis

Wanda 1 year after diagnosis

The diabetic care back then was a bit of a nightmare, initially. I had a stainless steel needle that my mom sharpened on a matchbox (the gritty strike edge), and she then sterilized by boiling it in a strainer along with a glass syringe. She did this every night so I was ready for my single shot in the morning. I took snacks to school for mid-morning and mid-afternoon, as well as my carefully measured lunch. I was on the school track team and also played field hockey, so if I needed extra sugar, I drank some juice.

By the time I was 19 we had disposable syringes and needles available at the pharmacy, but with the appearance of recreational drugs on the scene, I would get a hard time when I purchased them, so I had to show them my medical card stating I was diabetic. I got my first home glucose-testing machine when I was in my thirties, and it was about the size of a paper back book, but still fit in my purse. It cost about $250 and was not covered by our medical plan at the time. Thankfully, managing diabetes has gotten easier.

There was NO history of type 1 diabetes in my family, so no one was on the lookout for it. The signs are great thirst and consumption of liquids, resulting in increased urination. Fast weight loss and lethargy come quickly afterwards. I lost weight two weeks after the symptoms appeared. A simple blood glucose test can diagnose diabetes.

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Here I am­— 53 years (and still counting!) after diagnosis. I really have 2 jobs in life: one is regular life, school, employment and the other is managing my diabetes. It makes for a busy schedule, but I am still here, enjoying the results of good management and great medical care. I have travelled the world: Australia, England, much of Europe, Hawaii, the Bahamas and many of the U.S. States, without a single incident. May every newly diagnosed child take heart; there is a great life ahead. You just have to believe it and go for it. Diabetes doesn’t have to run you; YOU manage IT!

Henry, Beyond Type 1

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The Diabetes Online Community (DOC) is growing. Beyond Type 1 was founded in “February 2015, and seeks to bring a new level of respect, understanding and support for those living with type 1 diabetes.  BT1 wants to highlight the brilliance of those fighting this disease every day while always working toward ensuring a cure is on its way” (beyondtype1.org). BT1 has a great Instagram account that shares an image and a story, just like Henry’s story.

Henry’s story on Beyond Type 1’s Instagram: I live beyond by telling my friends about my pump. I’m brave when I get site changes. When I grow up I want to be a paleontologist and look for dinosaur bones on the beach! My name is Henry and this is how I live beyond!

Raise a Cupcake: Semisweet Turns 1 Month Old

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Semisweet will be a month old tomorrow, August 17, 2015, and it will be a sweet mile marker, with stories already shared on the The Mighty and Yahoo! Parenting.  Thanks for reading, and thanks to Melia and Connor, who’ve stepped out to share their diagnosis stories. Voices are advocacy. Let’s advocate for a life with T1D one story at a time.

Semisweet is busily planning  giveaways, more diagnosis stories, and a social media campaign for Diabetes Awareness Month this November, so keep reading and sharing your comments and thoughts.

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In the meantime, we’ll celebrate with a cupcake and this helpful formula for frosted deli cakes: weigh the cake in grams and multiple by .55 to find the carbs. Cheers!

Have Diabetes, Will Travel: A Summer in Review

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5,249 miles

34 days

18 states

1 oil change

16 site changes

4 Dexcom changes

2 vials of insulin

2 Dexcom Receivers

When Henry was first diagnosed with type 1 diabetes, I was afraid to put him in the carseat and drive to the grocery store. What if he was unconscious from a low blood sugar, but I thought he was just asleep?  What if he needed rescue carbs and I couldn’t get them quickly enough?  How was I supposed to drive and watch for symptoms in the rear view mirror? In hindsight, those fears seem silly, but those fears are valid concerns. Slowly, we got back on the road and increased our travels.

Our families live over 850 miles away, so the first winter vacation after diagnosis, we faced the acid test of really traveling with diabetes. We learned a 10% increase in basal would not even touch a high blood sugar caused by sitting in the car for hours on end. We watched the effects of fast food on the Dexcom receiver, as it read HIGH for many hours while we threw insulin at a stubborn blood glucose of 400. We’ve created innovative rest stops, and the less said about this, the better. 

Traveling with children is never easy, and traveling with a child who has diabetes is even not easier. To begin with, there’s the sheer mountainous amount of additional luggage that holds supplies and back up diabetes supplies. You have to calculate for site changes or multiple daily injections (MDI’s) and plan for back-ups if those fail. Insulin should be kept cool, plan for meals on the road (not fast food), and then there’s the absurdly high blood sugars caused by sitting in the car for long periods of time.

Henry can’t do three things because he was diagnosed with diabetes: serve in the military, become a commercial pilot, or a commercial truck driver. I’m OK with this list, but he can do everything else. He can do everything else; it just requires extra planning. Taking grand, long summer vacations is a rehearsal for the other challenges he’ll face while living with diabetes.

We crank his basal up 60% and hit the road, because the effort and payoff is pretty sweet.

meeting Mickey and Minnie at Friends for Life 2015

meeting Mickey and Minnie at Friends for Life 2015

time on the family farm

time on the family farm in the southeast

walking in the Atlantic in Maine

walking in the Atlantic at Maine

Test Strips Cost $1.40 Apiece Without Insurance

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Let me be the first to say we have good health insurance, for which I am thankful, but many people do not. Type 1 and type 2 are expensive diseases for the patient and the insurance company. The burden of caring for a chronic disease with no or inadequate insurance is stressful and cruel, particularly for a disease of higher occurrence in a pediatric population. I read posts from families in the Diabetes Online Community (DOC) where there’s a six month or year waiting period for a pump or CGM, or only a certain number of test strips are covered. Underinsured diabetes care is thick with irony. For many people with T1D, pumps and CGM’s  are the very products that make management easier, and thus decrease the chance of negative long term complications, but these are the products  for which the insurance companies can have extreme waiting periods. Thick with irony. Sometimes, there are insane diabetes moments, which can run the gamut from frustrating to humorous, but there’s always a touch of irony. Here’s mine from last week.

The scene: chain drugstore, mother picking up a prescription twelve hours after returning from vacation, which included attending a diabetes conference, a 7 year old non T1D child is accompanying the mother on this pre-lunch errand and intermittently asking for candy that is for sale on the drugstore counter, pharmacy tech places several large bags on counter…

Mother: And the test strips are in the bag?

Pharmacy Tech: (looking through 4 prescription sheets) No, it doesn’t look like it.

Mother: But I got this text from you (shows text) seven days ago saying the prescription was ready for pick up.

Pharmacy Tech: We text you when the prescription hasn’t been picked up in 1 week.

Mother: I have the test strips on autofill, and we were out of town at a diabetes conference.

Pharmacy Tech: We text one week after no pick up and then we can only hold the prescription for one more week after that. After 14 days we have to return them because insurance won’t let us hold them for longer. If you haven’t picked them up in 14 days, the insurance thinks you don’t need them.

Mother: I had no idea about this policy. My son needs these test strips, that’s why I’m here. We have five test strips at home, not enough to get through the day.

Pharmacy Tech: You can buy them out of pocket.

Mother: How much will that be?

Pharmacy Tech: Let’s see. At $1.40 per strip, hmmm, that’s more than I thought they would be, with a prescription of 400, that would be $560 dollars.

Mother: Wow, just wow.

Pharmacy Tech: Yeah, that’s a lot. Insurance won’t cover these until next month, but you can call us a week early and we can try to fill it early if that will help.

Caregiver Cheat Sheet

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Last summer I sat on the floor outside the room while Henry was in art camp. He’d been diagnosed with T1D five months prior, and he’d been on the pump for the last two months. The camp was only one week long, so surly I could just sit on the floor and meet him for snack time and watch the Dexcom (this was pre Share), right? I sat on the floor and Henry loved art camp. However, I had ample time to contemplate the fact that until Henry is old enough for self-management, we can no longer drop Henry off at school, camp, a friend’s house, a birthday party, or even leave him with a family member, without talking about diabetes care.

When you tell someone about diabetes care, I’ve noticed three general reactions.

  1. A glazed over look appears in the eyes, then mouth, and invades the general posture of the listener. Do not leave your child with this person.
  2. The listener sort of gets it, and starts asking questions like, “You have to do that every two hours?” “You mean he can have sugar?” “So the pump doesn’t automatically know how much insulin to give him?” Leave your child with this person only after feedback loop systems are the standard of care or after you’ve had several more conversations about diabetes.
  3. Shaky hands accept the medical devices and instructions. Usually this person says something like, “I will call and text you.” Two minutes after you’re in the car, there’s a call, but you know this person can handle it.

Obviously it’s never a good idea to leave a child with diabetes with a caregiver who does not understand the basics of diabetes or is unwilling or too nervous to administer care. However, it is possible to train willing family and friends. To help our willing family members, babysitters, and preschool staff, we created a caregiver cheat sheet. The sheet covers: blood glucose range, hypo & hyper treatments, carbs for meals, Animas pump information, and Dexcom CGM information.

caregiver cheat sheet

Here’s the link to the document you can download and edit to specific person with diabetes and product information.

Link to Caregiver Cheat Sheet

Connor’s Diagnosis Story

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Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing Connor’s Diagnosis Story in his own words.

Connor, diagnosed at age 15, October 30, 2009

I walked up to my math teacher’s desk, and asked for a hall pass. He looked at me with furrowed brows, “Connor, we’re only ten minutes into class. You should have gone before the bell rang.”

Something was going on with me. In my family I’d always been known as the one with the iron bladder, the champion of long car rides and movie viewings. But recently, I had to go to the restroom every half hour. Liquids rushed through me, and no matter how much I drank I was still thirsty.

When I returned to the classroom and gave the pass back to my math teacher, he studied my face and then the rest of my body. “Are you feeling alright?” he asked me, his tone more accusatory than concerned.

Later that day, I met my dad in the school lobby to sign out for a doctor appointment my mom had scheduled to address these strange symptoms.

“Are you okay?” my dad asked, as he pulled me into the corner of the lobby.

Over the past two weeks, teachers, students, and family members asked me that question over and over again. A couple of weeks ago, I’d had the flu and dropped a considerable amount of weight. My performance in cross-country meets had also descended into a valley of disappointing rates and unfinished races, but I figured I was still recovering.

I usually brushed off this repeated question, but when I met my father’s gaze, I knew there was something else. Sighing heavily, my father ran a hand through his hair. “Connor, I’m just concerned. Your math teacher contacted me earlier today and told me he’s concerned that you’re bulimic.”

“Excuse me?” I demanded in a whisper, my voice raspy from a dry throat. “Dad, you see how I eat. There’s no freakin’ way I’m bulimic. How could you believe something like that?”

“Connor, I’m not saying I agree with him, but you have been going to the restroom a lot after meals and you’ve lost so much weight that… well, it comes to mind.”

My family doctor was known for being a jokester amongst my siblings and myself. Generally, visits to the clinic involved thirty minutes of minimal tests being done while he rambled on about the crazy experiences of his own kids, or dropped as many bad puns as humanely possible. So when he stepped into the room, white lab coat swaying as silent as his wordless mouth, I knew there was something deeply wrong.

“Connor, we need to get you to the University of Iowa Children’s Hospital immediately,” he said sternly as he flipped through his clipboard until he found the form that he was searching for. He explained to me that my blood sugar was close to 500 over the normal level, sitting dangerously at 610. This also meant that my body had entered a state called ketoacidosis, a condition where my body was trying to urinate out toxins, which explained my constant thirst.

I stopped hearing anything that he said after the words “near coma” were uttered, and even my mother’s tight grip on my hand as she rushed us down the highway towards Iowa City couldn’t stop them from circling in my head.

With my mother beside me in the emergency room, a nurse explained that I’d lost so much weight because my body could no longer break down carbohydrates. Due to my inability to digest food properly, my body was now attacking the little amount of fat I carried. Before the appointment, I’d merely seen myself as a scrawny fifteen year old who’d lost a couple pounds, not 25 pounds in 2 weeks.

The medical staff told me that with the right training and equipment, I could battle Type 1 Diabetes, that with time I would get used to lancets and needles and blood drops and damaged nerves in my fingertips. There was one crucial piece of knowledge that was implied: T1D cannot be defeated, only subdued.

On my second night in the Pediatric Unit, I was jolted awake as a sharp object stabbed into my pinky finger. I looked over to see a nurse in blue gloves testing my blood sugar. “Sorry, I didn’t mean to wake you,” she said.

“It’s fine,” I replied groggily, and motioned towards the tester in her hand. She brought the meter over so I could see it. The screen flashed: 248.

I gave her my best smile, but I averted my gaze, not wanting her to see my fear. With all the talk of comas, needles, diets, and other health complications like loss of sensation in limbs, and (very rarely) blindness, my morale was still low.

“You play Kingdom Hearts?” she asked me, holding the Nintendo DS case that’d been sitting on my nightstand: the newest game in the series, Kingdom Hearts 358/2 Days. I’d played it five hours that day, sitting in my bed while my parents conversed with doctors about insurance and insulin.

She laughed, “I love these games. You know what? You’re kind of like a video game character now.”

I sat up and pulled my legs to my chest, resting my chin on my knees. “How?”

“Well, you have to regulate your blood sugar, right? And what you eat and drink, and how much you exercise, and when to take shots. Stuff like that.” She held up the blood glucose meter, pointing towards the digital numbers. “This is your life bar. And if your health gets too low, you need to drink a potion to get yourself back at the top of your game. But when it’s too high, you’ve got a status ailment, so you need to take your insulin, which is an antidote. And your lancet is your weapon against not knowing what your levels are.” She winked at me. “You’re going to be fine. You should get back to sleep, you’ve got your four hour class on diets and insulin dosages tomorrow.”

I realized then that many health professionals were here trying to make their patients’ lives easier or, at least, bearable. She didn’t need to make that analogy for me, or even talk to me when I’d woken up. But she did, and that made all the difference.

Connor today as a college student

Connor today as a college student