Hard Questions on World Diabetes Day, and Everyday

November 14th is World Diabetes Day (WDD), a day created by the International Diabetes Federation to bring awareness to the growing concerns surrounding type 1 and type 2 diabetes. Last year, I recognized WWD with the 2015 Type 1 Diabetes Index.  This year, some of those numbers have grown.

 

My son is in his second week of participating in a sport, so I’m new to managing blood sugars during organized physical activities. During his first week of practice, I sat watching the CGM (constant glucose monitor) as it read 120 with an arrow straight down, then the next read out, five minutes later, was 90 with two arrows down. At practice this week, I disconnected his pump, hoping to avoid the rapid drop.

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As I held his makeshift pancreas in my hand, I looked up and saw grandparents taking short videos, parents cheering kids on, siblings sitting through practice, drinking from juice boxes, eating unmeasured food. In one hand was my son’s insulin pump, the other his CGM receiver, and with all my willpower, telepathically, I was willing his blood sugar not to drop any lower, but it was 98 with an arrow down. As I rushed downstairs to give him a glucose tab, it struck me, once again, how different my experience of the ordinary often is, usually because I’m thinking about some difficult diabetes question or trying to do diabetes math, which is impossible, by the way.

For World Diabetes Day 2016, I’m sharing a few of the typical questions I have throughout any given day.

If he’s eating 45 carbs for dinner, with lots of protein, but not much fat, is 1.75 units of insulin enough to cover the meal?

Should I wait 5 more minutes to see if one glucose tab is enough to bring his blood sugar up?

Will the school nurse think I’m overprotective if I call? I just dropped him off at school with 2 units of insulin on board, a glucose tab in his mouth, and he’s 79 with an arrow down. Yes, call. Are you crazy? Why would you not call and tell her this?

Did I give him enough insulin?

Did I give him too much insulin?

Should I explain to the man who just picked up his kid and moved him to the other side of the pool after seeing the medical devices on my son that my son is not dangerous or contagious? Should I tell him it’s OK to ask questions, but not to stare and ostracize?

OK, the packaged pasta says 2/3 cup of dry pasta is 44 carbs. Hmmm. How is dry pasta a useful nutrition fact? Do people actually eat dried pasta?

Why do I feel guilty and lucky at the same time because my son has access to insulin and others don’t?

When I walk in his bedroom this morning, will he be conscious?

Why does he eat the exact breakfast every morning and sometimes he’s 120 an hour after and other times he’s over 300? The.exact.same.breakfast.

What if Henry has kids and they get diabetes?

As I look at his CGM many hours after eating out, I wonder just what exactly is in restaurant food.

When I’m talking to a representative  from my insurance company after they’ve limited my son’s test strips and declared his Dexcom CGM out of network, and I ask this person how much my son’s life is worth, do I really expect an answer? Do I really want them to answer this question?

How will my son handle the burden of type 1 diabetes as a teenager?

Is his sister peeing more than normal? Am I?

After asking for the nutrition information at a national chain of ice cream parlors, do I push it and try to explain for a third time that I’m asking for carbohydrates, which are a very different thing from calories?

When Henry is anxious about a site change, he says, “I don’t want to have diabetes. Why do I have diabetes?” Is it enough to say, “I don’t want you to have diabetes either,” and “I don’t know.”

Those two pieces of pizza are 70 carbs. Right?

After learning of someone else in my local community is diagnosed with T1D, I wonder why the CDC is not tracking the incidence of type 1.

How will Henry respond when some of his classmates stop being curious and start being hurtful?

Sleeping in two and three hour intervals is enough, right?


November is diabetes awareness month. Please consider signing this petition that asks the CDC to start tracking the occurrence of T1D or making a donation to a diabetes organization.

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Insulin Pump Meets Atlantic Ocean

Diabetes is often considered an invisible illness. For the first months after our son’s diagnosis, a stranger could look at our kid and not know he was living with a lifelong chronic disease. He was on multiple daily injections (MDI) and didn’t yet wear a continuous glucose monitor (CGM), so no medical devices identified as someone with a disease or disability. However, three months after his diagnosis, he started wearing an Animas insulin pump and Dexcom CGM.

In fact, unless someone knew what to look for (tubing coming from a pump, adhesive peaking below a shirtsleeve), Henry’s diabetes would be invisible to most. But when Henry swims, his diabetes becomes visible.

There are all sorts of pumps and a few CGM’s on the market, all with varying degrees of water resistance. I think the choice of insulin therapy and delivery is personal and specific to each person with diabetes. For us, the Animas pump was a good choice. It’s waterproof, and we devised a way for Henry to wear it while at the beach, so we don’t have to disconnect and manually deliver the basal a couple of times an hour. Henry’s free to play in the hot sun without us worrying about his insulin overheating or losing a pump site. However, to ensure that the site and pump are in good working order (even in salt water) we devised a pretty creative work around. It’s a bit like nesting dolls, but to us it was worth preserving the site and not interrupting Henry’s time at the beach.

  1. Henry wears a contact detach infusion set, and we cover it with a layer of Tegaderm HP, so the site itself is protected from sand, salt, and water.
  2.  The next step was to secure the pump. We placed it in a ziploc bag, with the tubing coming out at the very edge. Then we secured the opening with gaff tape.
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Opening secured with gaff tape (upper middle)

 

 

 

 

 

 

 

 

3. Next, we placed the pump in its ziploc bag in a FRIO insulin pump wallet, so that the insulin didn’t denature in the heat, and then placed the FRIO pump wallet in a SPIbelt. (I told you it’s like nesting dolls!)

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rocking the SPIbelt

4. Hang the d-bag from the sun shelter and enjoy a preserved site and pump.

A Season of Thankful Awareness

In a recent post on A Sweet Life, “Neonatal Monogenic Diabetes: Cameron Lundfelt’s Story,” Cameron’s mom describes the overwhelming standard of care given to young children with garden variety T1D, “I was always concerned about when did he last eatWhat are his sugar levels?  When is the next time he has to have a shot?  Did I give him too much insulin at the last meal? Did I not give him enough insulin? I lay awake at night wondering how I could have done better at keeping his sugars ‘within range.'” Through Cameron’s mom’s diligence, it was later discovered that Cameron has a rare form of diabetes caused by a genetic mutation that can be controlled with oral medication, but all parents of children with diabetes know the fears and worries she describes.

November is almost over, so Diabetes Awareness Month is coming to a close, but the end of the year holidays are starting. Diabetes Awareness Month juxtaposed to the holiday season means awareness morphs back into silent difficulties for so many families living with T1D.

Here we are, at the end of November, taking a deep breath and sharing the life we live in two hour increments during each day and night of all twelve months.

Super T1D in blue with blue d-bag. #bluefridays #projectbluenovember

A post shared by Semisweet (@semisweett1d) on

As we enter the holiday season, we’re glad for:

  1. insulin
  2. Fredrick Banting and Charles Best, discoverers of insulin
  3. Dexcom, a continuous glucose monitor
  4. batteries that power insulin pumps
  5. insulin pumps
  6. the Diabetes Online Community
  7. Children with Diabetes, Friends for Life Conference
  8. Henry’s dedicated and caring preschool teachers
  9. Ed Damiano, Denise Faustman, JDRF
  10. Henry’s sense of humor

And after all the chaos, illness, and destruction, the last thing to fly out of Pandora’s box:

The last thing to fly out of Pandora's box. #handsofhope #projectbluenovember

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Caregiver Cheat Sheet

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

Diabetes’ First Day of Preschool

Starting preschool can be scary, but starting preschool with diabetes is wake-up-at- 2:00a.m. in-a-sweaty-the-apocalypse-is-nigh-dead-panic-scary. Preschools vary, but the keys to the best possible experience of diabetes at preschool are education and communication. This means education of the staff, the children, and the parents of the children.

Obviously, education of the staff must be the most thorough and detailed. When our son was diagnosed he was in an in home daycare, and my husband and I split time with him at daycare  for his first week back, and then came during nap time to teach the staff how to draw insulin in a syringe, then use a pen, and then use a pump. We transitioned through all these in a quick three months. When our son started at a preschool on campus where we work, we coordinated with the director to train the student workers and staff as part of their training hours. We brought Henry’s dinner with us and demonstrated counting carbs, checking blood sugar, and then bolusing for the carbs he ate right in the training meeting. Picnics make all meetings better.

We brought Rufus, the JDRF bear to preschool, and we purchased copies of the Pink Panther Understanding Diabetes books for the teachers and classroom. Lastly, we wrote a letter to be sent home with the parents. Luckily, the school Henry’s attends does not celebrate birthdays with food, but I was very touched when a few weeks after school started we attended a birthday party  for one of his friends from school and discovered a plate of cheese, a bowl of goldfish, and a low sugar cupcake just for Henry.

superhero with diabetes at super preschool

superhero with diabetes at super preschool

Here’s a version of the letter we’re sending home this year. If this letter works for you, adapt it and take it to your preschool.


Dear _____________________,

On March 6, 2014 our 3 ½ year old son, Henry, was diagnosed with type 1 diabetes. Type 1 diabetes is an autoimmune disease. Nothing Henry ate or did gave him this disease, and type 1 diabetes in not contagious. Type 1 diabetes is an autoimmune disease. For the rest of his life Henry will take insulin injections, monitor what he eats, and test his blood glucose with finger pokes.

Because your child/ren are at pre-school with Henry, they might see Henry get his blood sugar checked, receive insulin, or hear talk of carbs. Henry wears an insulin pump, usually around his waist, and other children are often curious about his “phone” or “iPad,” which is really his pump.

As Henry’s parents, we’d like to take a moment to share with you how our life, particularly Henry’s, has changed. We have to count all the carbs Henry eats and give him insulin to cover the carbs. Basically Henry’s blood sugar is measured, he is then given insulin remotely through a pump and meter-remote, then he eats. His blood sugar is checked two hours post meal. We repeat this every time he eats. Henry wears a pump 24 hours a day that delivers insulin through a needle that is subcutaneous. He also wears another device (continuous glucose monitor (CGM)) on his back or abdomen that measures and transmits an estimate of his blood glucose.

He can do everything any other kid can do, but it just takes extra planning and monitoring. For example, what can’t happen without planning is for Henry to be given a cupcake at a birthday party without insulin. He can still eat cake and cupcakes at birthday parties, but it requires planning and extra carb counting. We always have to know how many carbs he eats and when because he needs insulin for this.

We want Henry to participate in every opportunity, and we want him to feel included, but because of type 1 diabetes, this means we have to plan more carefully. We don’t expect any family to change how they choose to celebrate his or her child’s birthday at preschool. Our purpose of this letter is to inform you. Deli frosted cupcakes make tight management of blood glucose difficult. Angel food cakes, some cheesecakes, and pound cakes tend to have lower carbs than other cakes. Reduced sugar yogurts and popsicles are also good treat alternatives. “Free foods” are foods without carbs like sugar free Jell-O or cheese sticks.

Vomiting from tummy bugs and fevers from colds are particularly troublesome because the stress of the illness raises blood sugars and produces ketones in people with diabetes. What is a regular cold for a kid without diabetes means careful monitoring and potential hospitalization for a child with diabetes. Last year, Henry was in the hospital twice as he battled a tummy bug with type 1 diabetes.

While Matt and I wish this road were different for him, it isn’t, and our job is now to normalize a life with diabetes for Henry, and to be his advocate. We’re sharing his diagnosis with you because he is so young we are the ones managing his care; we feel the more people in our community who know, it increases the possibility of better management. Of course, we’re open to questions you have as we learn together how to keep Henry healthy. A good website is http://www.diabetes.org and http://www.jdrf.org. He’s a healthy four-year-old, who also happens to have diabetes.

With Love,

(shared email and cell phone)

“I Got Scrapes, And This Is Not a Scrape”

This guy opened the first ever Diabetes In A Minute a series of mini documentaries about living with diabetes at Friends For Life 2015 in Orlando.

He’s got scrapes, but obviously diabetes isn’t one of them. For now. When this video was broadcast across four big screens, Henry left saying, “Everyone knows my name is Henry.” And it’s true, people came up to Henry and complimented his video, to which he replied, “Maybe next year you can make a video.”

He is young and he is innocence. In the video, Henry blithely tells the audience about his scrapes, and in the next breath he shows off his pump and continuous glucose monitor (CGM), as though these two were equal. One day the stigma and needed longanimity of “diabetes” will outweigh scrapes, and that is a natural rite of passage.

When a stranger asks me about the gear Henry is wearing or I explain to a colleague why I had to step out of meeting a few days prior, T1D comes up, and I briefly explain the basics. Usually, this scenario goes smoothly and hopefully someone understands more about T1D. However, sometimes this moment is teeth cringing, and an over-sharing stranger tells me about his or her dead grandmother in the produce aisle. When people respond after learning of my son’s diagnosis, I believe they are usually attempting to relate or don’t know what to say, but as a parent of a child with diabetes, the two most dreaded responses from someone who learns of my child’s disease are:

1. Oh, I’m so sorry. My grandma / great aunt / grandfather’s cousin died of diabetes. They were 48 / 52/ 57. At least I think it was Type 1, or maybe it was Type 2.

I usually say, “I’m sorry to hear that,” but I want to say, “I’m sorry to hear that. Once you figure out if it was Type 1 or Type 2, you  might want to read a little more about the amazing treatments available today for people with T1D. Oh and hey, have some common sense. Maybe don’t tell me about your dead relative while I’m grocery shopping with my four year old son who happens to have the same disease that killed your grandma / great aunt / grandfather’s cousin.

2. Well, at least it’s good he has it so young, so he won’t know the difference when he’s older. 

I usually say, “A lot of people say that,” but I want to say, “A lot of people say that because they are misinformed. I’m sure he’s noticed his older sister is not wearing a pump and getting blood sugar checks 10-12 times a day. He’s also noticed that the other twenty-three kids in his preschool class don’t check their blood sugar, wear pumps, or go on field trips with massive medical supplies in a backpack. Also, those 13 or so years, which he would of had if he were diagnosed later, with a normal, salubrious blood sugar that are conducive to his longevity, I don’t mourn those.”

I think Henry’s got some scrapes, but hopefully as people become more educated about T1D they won’t add a new scrape. The first step toward empathy is meeting someone with T1D, and the second step is learning what to say. It’s great to hear, “I’m sorry to hear that. Can you tell me more about Type 1?” or “I’m sorry to hear that. I’m not sure I really understand the difference between Type 1 and Type 2,” or even, “I’m sorry. I think I know someone else with that.” People with T1D need advocates to understand the difficulties and trials of living with T1D, so listen to their stories before you tell yours.

D-Bag Roll Call

Having diabetes sucks, so my husband and I take every opportunity to find humor in odd d-moments; therefore, we call the bag that carries the glucagon kit, Animas meter-remote, glucose tabs, and all the other supplies, “d-bag.” Yup, the d-bag. We might be going out to eat or dropping Henry off at preschool, and while locking the door, one of us will call to the other, “Hey, you got the d-bag?” We live in a nice, midwestern neighborhood, and we are those neighbors.

When Henry was diagnosed, the JDRF gave us a the Bag of Hope that contained Rufus and a camo green d-bag, but we quickly out grew this d-bag.

JDRF d-bag from Bag of Hope

JDRF d-bag from Bag of Hope

 

Then we graduated to the beauty below, an up-cycled bag that a kid’s lunch from the San Diego Zoo came in. I’m proud that we carried this bag without one scrap of shame for eight months.

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a classy d-bag made from a recycled water bottle

When I realized we were also dumping used test strips, tissues, crumpled receipts, and treasures like pine cones discovered on walks into the bag, it was time to upgrade the d-bag. A couple of FB groups for diabetes posted about the Smartstar Multi-functional Outdoor Sports Chest Bag Pack. We ordered it and love it. There are long inside pockets perfect for the glucagon kit and juice boxes. We use a carabiner to clip the CGM (constant glucose monitor) to the outside d-ring.

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We’re going to add the international symbol for diabetes, a blue circle, and some flashy blue paracord and max out this d-bag. Pockets galore! This d-bag will be able to hold many, many pine cones.