Christmas List

Henry had only been diagnosed with diabetes for a few weeks when I found myself lurking in the middle of an angry debate on a social media about whether or not diabetes was a disease or condition. People who thought diabetes was a condition explained that being labeled with a disease was limiting, and the label had negatively impacted the way others saw them. The other side maintained that diabetes was certainly a disease because it required medication and daily intervention to stay alive and healthy. Furthermore, they argued that if diabetes were seen as a condition, then research and funding would wane because people would not understand how serious type 1 is.

As the parent of a recently diagnosed three-year-old, scared of every number on the meter, dreading each insulin shot, terrified of the possible side effects, of course I considered T1D a disease.

Now, three years later, I don’t want a disease to label my child. I don’t want him to see himself as “diseased.” Yet, every few months, I read of people, including toddlers, who pass away from type 1, and in moments like this, never is it more clear to me that type 1 is a disease.

For the past two years, we’ve attended the Friends for Life Conference in Orlando, FL. One of the vendors gave Henry a copy of the Medikidz comic about type 1 diabetes, which Henry loves to read at bedtime.

A few nights ago, Henry came out of his room with the book in hand. He was very excited, and this is the conversation we had.

Henry: Mama! Look, did you know that there are other Medikidz books? There’s one on lung cancer, chronic pain, and melanoma! Can I get these other three books for Christmas? Can I put them on my Christmas list?

Me: Yeah, I guess so. Is that something you really want?

Henry: Yes! I can learn about lung cancer. Is it like diabetes, where your beta cells get attacked?

Me: No, cancer is different. It’s when certain cells don’t grow the way they’re supposed to.

(long silence, Henry regards the back of the book)

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Henry: Hey, this book says diabetes is a disease! Is diabetes a disease?

Me: Well, some people say yes, and some people say no.

Henry: So, is diabetes a disease?

Me: I think you’re the person who gets to decide that. So, what do you think?

Henry: I think diabetes is just diabetes.

 

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

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

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a diabetes care kit from American Girl

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

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

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

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

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

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The CDC is Getting Diabetes Wrong

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

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

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

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

CDC 2014 diabetes graph

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

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

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

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

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

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

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

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

Charitable Fighting

On episode 41 of the Juicebox Podcast, host, Scott Benner talks with the JDRF’s Director of Discovery Research, Albert Hwa, about some of the current and promising research the JDRF is doing. During the interview Benner posses an almost rhetorical question, “What’s the last thing we cured as a society? Is it polio?”

This question hit me hard, maybe because I was pulling into the drugstore parking lot to get yet another month’s supply of insulin and test strips. We’ve never told our son that his diabetes will be cured. I don’t count on type 1 diabetes being cured in my lifetime, or his. I hope it will, and it’s wonderful to hope and support the goal of curing diabetes, but I think it’s dangerous to promise a young child with diabetes that his or her disease will be cured.

If Henry grows up believing that his disease will be cured in five or twenty years and it isn’t, how will this affect his feelings toward the organizations, scientists, and doctors who are working on a cure? I’ve heard so many people and families affected by T1D talk about turning away from charities, organizations, and even their own self-care, because at diagnosis, medical professionals and organizations said a cure was on the horizon in X years. And after X years arrived, there’s no cure.

When Henry asks if he will have his diabetes forever, we tell him yes. In general, when “yes” is a harder answer than “no,” the question is serious. We tell Henry that he’ll have his diabetes forever, but that it will get easier to have T1D because doctors and scientists are working really hard on ways to make diabetes hurt less and be easier to take care of.

If you follow diabetes research, you’re well aware that people have strong opinions about the JDRF, The Faustman Lab, and other organizations. The stakes are high and charitable giving is limited, so it’s natural that opinions butt heads. Shorty after our son’s diagnosis, I was on the phone with our local chapter of the JDRF. I’ve read about the promising trials going on at the Faustman Lab, and I was in the room when Ed Damiano released the iLet this summer. Some people gasped, and others who’d been living with diabetes for decades began to cry, and in my own anticipation for Henry to have a better life, it struck me that this is one of the many ways hope arrives.

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Photo Credit: Jeff  Hitchcock, Friends for Life

When Banting first conceived of insulin, it’s rumored he was in a semi-intoxicated state, preparing for a lecture on metabolism in the wee hours of the morning, while in a less than prestigious lecturer position. He was largely working in isolation without much support. Lightening may strike twice, but I’m not counting on the next diabetes breakthrough to emerge from isolation and without support.

I don’t know if the next advancement in diabetes care will be islet transfers, beta cell encapsulation, or related to immunotherapy. I do know that it’s important that my son sees us supporting the people who work everyday to make his life easier.


This week, Semisweet donated money to the Bionic Pancreas, the Faustman Lab, and started Team Henry for our local JDRF One Walk. We added a Donate page to provide more information about diabetes research. Please consider joining us in one of the causes.

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.

Trick-or-Treat Cheat Sheet

When our children were very young, we trick-or-treated in a neighborhood of Los Angeles where our good friends lived. It just so happened many scenic and sound design, as well as prop folks, who worked in the movie industry, lived here. Hollywood loves Halloween. It was not uncommon for a home owner to create a haunted house in his or her front yard, or for macabre Halloween scenes to be staged in rented trailers and placed in driveways.

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As new parents, this holiday geared toward children, celebrated in a truly fantastic way, hardwired its way into the robust and fun experiences we wanted to give our children in their childhood.

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Fast-forward about 1,800 miles and almost two years, when our son was diagnosed with type 1 diabetes; last Halloween was his first trick-or treating experience with type 1 diabetes. Halloween is just one of the many occasions that makes parents of children with type 1 diabetes more creative, vigilant, and exasperated.

I understand, there’s multiple ways for families living with type 1 diabetes to navigate Halloween: a candy buy back, or perhaps a “switch witch” leaves a desired toy in exchange for a pile of candy.

Last year, I fretted and worried. We put out a teal pumpkin, and yet I was determined that our son would experience every ounce of this holiday, just like any other kid with a fully functioning pancreas. Secretly, I was prepared for a candy buy back. I had a roll of quarters ready, as well as a really neat Lego set two swap for candy, but we didn’t need either.

What we did need, was a really cool cheat sheet that listed common candy servings and carbs. There’s lots of lists out there, but we used one from the JDRF. Here’s this year’s JDRF Candy Carb Counts. I printed several copies to keep in my back pocket and invested in a nice Surefire flashlight. I cranked Henry’s basal up a bit, and in the oncoming cold midwestern winter, this fireman raced door to door, eating chocolate along the way.

Henry's first Halloween with type 1 diabetes

Henry’s first Halloween with type 1 diabetes

You know what? He went low, a couple of times, but no problem. We had a whole bag of fast-acting carbs to deal with that.

No Added Corn Sugar

I’ve always read nutrition facts, but now I analyze nutrition facts because I have to depend on the the carbohydrates to determine how much of a life sustaining (or ending) drug, insulin, to give my kid. The first trip to the grocery store after our three-year-old son was diagnosed with type 1 diabetes was shocking. Our local grocery store has a nutritionist, and shortly after explaining why I was looking for certain products he said, “A grocery store’s a bad place to be if you’re diabetic.” He wasn’t saying anything I hadn’t already felt, but where else do you get food in March in the midwest?

I was at the grocery store for three hours, reading the nutrition labels for every food we typically eat. Freezing, I stood at the dairy case shaking my head at the yogurts, not because Henry couldn’t eat yogurt (he can), but because of all the added sugar in most every food we eat.

We’ve always been a family that cooks from whole ingredients, belongs to a CSA, and frequents farmer’s markets. However, we still have snack foods and sweets in our house. We’re pretty moderate— a little bit of most things, but having type 1 diabetes at our table has made our intentional choices even more intentional.

Reading nutrition labels and portioning food is a good reminder of just what and how much we should be eating.

I came across Eve O. Schaub’s memoir, Year of No Sugar. For one year, Schaub and her family of four ate only food with no added sugar. As they embarked on this year, the family had to discuss what the ground rules were and what defines no “added sugar.” Schaub was inspired to start the project after watching the amazing lecture, “Sugar: The Bitter Truth,”  by Dr. Robert Lustig, a Professor of Pediatrics, Division of Endocrinology at UCSF.

In case you don’t watch the 90 minute lecture, here’s the take away. Since the 1950s Americans are about 20 pounds heavier. We eat more sugar and carbs than we use to, and here’s the science part (45:00 into the video): fructose is metabolized in our liver in a way that’s similar to alcohol. Dr. Lusting says chronic fructose exposure results in metabolic syndrome:  obesity, lipid imbalance, and type 2 diabetes.

I know type 1 diabetes and type 2 diabetes are two separate diseases, with two separate etiologies. Type 1 is an autoimmune disease and type 2 is a disease associated with the interaction of genes and lifestyle. Since our son lives with type 1, we’ve become more aware of just how much sugar is in everything we eat. Constantly reading nutrition labels is a reminder of just what we should and shouldn’t be eating. Focusing on carbs and sugars has also shown us that  sugar is ubiquitous, so maybe it’s time to change the conversation around type 2 diabetes from one of shame and blame to one of regulation and education when it comes to the food supply in America.

T1D Helicopter Parents Unite!

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.

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)