10 Low-Carb Back-to-School Snacks

By Caroline Levens

24 count Crayola? Check. Pink Pearl eraser? Check. Expo dry erase markers? Check. There’s no doubt about it, back-to-school can take a lot of preparation, but back-to-school for families with children with diabetes adds an extra layer of complexity.

Wouldn’t it be nice if prepping for a school year with diabetes was as easy as the other line items on your back-to-school list? Unfortunately, there’s no foolproof solution to check the box off that line item, but there are snacks that can help children maintain normal blood sugars. I’ve gathered ten great-tasting, blood sugar-friendly snacks that children of all ages are sure to enjoy, whether for snack time, as part of their lunches, for classroom celebrations, or as after school snacks.

Even if your child with diabetes doesn’t follow a low-carb lifestyle, incorporating a low-carb snack here and there can make your life a whole lot easier. It can also help give them more time running to the monkey bars and fewer visits to the nurse’s office to treat highs and lows.

1. Low Carb Oven Cakes and Cookies

Low Carb Oven Cakes and Cookies

Is it me, or does it seem like there are more birthday celebrations than the number of children in the classroom? Of course, you want your child with diabetes to join in the festivities, but wouldn’t it be nice to eliminate the headache that can come with crazy blood sugars following those celebrations? Good news! Low Carb Oven makes homemade mini bundt cakes and cookie bars that are sugar-free, gluten-free, and certainly better tasting than whatever the school is serving. They freeze super well too, so you can simply pop one out the morning of an upcoming celebration, and your child is all set!

My personal favorite cake flavor as an adult is Lemon Poppyseed, but as a kid I’d probably have been crazy for the Vanilla and Triple Chocolate. The desserts are only 2-3 g net carbs, and most diabetics find that Low Carb Oven desserts don’t affect their blood sugar much. You may not even need to bolus!

If your school doesn’t allow peanuts, some of their products are peanut-free. Nut-free school? Maybe use them for treats off-campus, such as at birthday parties (because let’s be honest, there also seem to be more birthday parties than kids).

2. Quest Nutrition Chips

Quest Nutrition Chips

Who doesn’t love a good crunch? Leading chip brands may not have a ton of carbs compared to other popular snacks at 15-25 g per bag, but wouldn’t a five-gram total carb chip option be nice? Quest makes chips in tons of flavors, but my personal favorite is the Nacho Cheese flavor. Think of them as blood sugar-friendly Doritos.

And another great part? Normal bags of chips aren’t all that filling. The Quest chips have around 20 g of protein per serving or so depending on the flavor, so they’re sure to delay the amount of time it takes before you hear “I’m starving.”

3. High Key Snacks Cookies

High Key Snacks Cookies

High Key Snacks makes my absolute favorite blood sugar friendly packaged cookies. They could disguise as Mini Chips Ahoy in all aspects except their nutrition facts. Forget the high fructose corn syrup and other ingredients you can’t even pronounce; these only use natural sweeteners such as stevia, erythritol and monk fruit. They are crunchy and just the right amount of sweet. At just 2 g net carbs per serving, I can even get away with no bolus for their cookies.

These come in chocolate chip and snickerdoodle. Both are great, but I am definitely partial to the chocolate chip ones.

4. Kiss My Keto Gummy Bears

Kiss My Keto Gummy Bears

Kiss My Keto has had a tough time keeping these gummies in stock, and with good reason: they are awesome and super easy on the blood sugars. From the label, they may look high carb, but it’s nearly all fiber and barely budged my blood sugar level without any insulin.

Plus the cute little bears are naturally colored. Much better than red 40 and sugar-laden bears! Each gummy bear pouch only has 54 calories too, so it’s a great snack if your child is not actually hungry but wants something to nibble on.

5. Magic Spoon Cereal

Magic Spoon Cereal

Are you doing a double-take at the world cereal? Don’t worry, this cereal isn’t the nightmare cereal you’re probably used to. Even for the best sugar surfers among us, cereal is notoriously known in the diabetes community as one of the hardest foods to bolus for. Magic really is an appropriate adjective for the cereal; it’s ridiculously easy to cover with insulin. Each serving has only 3g of carbs but packs in 12g protein. It’s also gluten-free and has no artificial ingredients.

There are four yummy flavors to choose from: cinnamon, fruity, frosted, and cocoa. They sell a variety pack, too, if you want to offer your child some variety, or better yet, mix the flavors together.

6. Lily’s Sweets Peanut Butter Cups

Lily’s Sweets Peanut Butter Cups

You might be familiar with Lily’s for their chocolate bars, but what many people are less familiar with are their more recently launched peanut butter cups. If your child with diabetes loves Reese’s as a sweet treat, these are definitely an awesome substitute. They’re super convenient to send off to school too because each peanut butter cup comes individually wrapped.

The peanut butter cups come in milk and dark chocolate flavors. I’ve been a milk chocolate girl since childhood and always will be, but I can assure you both are great.

7. Notty Protein Chocolate

Notty Protein Chocolate

Yes, another chocolate recommendation right after Lily’s, because I consider them to be quite different (in fact, the biggest similarity is that they are both delicious). Notty is high-protein chocolate with no added sugar. It’s more bark-like than bar-like. Except whereas Bark Thins have 21 g net carbs and 11 g of sugar per serving, Notty has only 3 g net carbs and 1 g of sugar. Notty packs in 11 g protein per serving too, so it’s not just empty calories.

They have so many fun flavors. Fluffernutter is my personal favorite, and if I had to guess, I’d say it’d probably be the number one hit among kids too. Other flavors include peppermint bark, cold brew, lemon berry, and salted almond.

8. Curly Girlz Candy

Curly Girlz Candy

Like the idea of a blood sugar-friendly candy alternative but need something nut-free? Curly Girlz Candy makes some awesome sugar-free hemp brittle that doesn’t contain nuts. The brittle contains super low glycemic plant-based sweeteners. Now I know hemp brittle may not sound like the most kid-friendly option, but it’s buttery, crunchy and has a cinnamon flavor. They even sell “Snacker 2 oz” bags of candy on their site that are perfect for back-to-school.

Other sugar-free candy offerings on their site include pecan brittle, caramels, coffee toffee, almond toffee, pecan clusters, and coconut macadamia bites.

9. Smart Baking Company Smart Cakes

Smart Baking Company Smart Cakes

Smart Cakes are light, fluffy cakes that I personally don’t need any insulin for. They have 0 g net carbs. The carb count on the label all comes from fiber and erythritol, which is a non-glycemic sweetener.

Each individual cake is only 38 calories! Another cool thing about these for school is they can stay at room temperature for 120 days, so they can easily be stashed in a classroom cubby and taken out as needed.

Flavors include cinnamon, lemon, chocolate, raspberry cream, and orange. Lemon and cinnamon are my favorites. I will say that the texture and consistency of these are not like birthday cake, and nor do these cakes have icing. The texture and taste are really good, however, but it’s more snack-like or even breakfast-like than dessert-like in my opinion.

10. Keto Krate

Keto Krate

Hopefully, this suggestion isn’t considered cheating since it’s not a snack itself–but rather a snack subscription. I absolutely love Keto Krate because I get to discover new blood sugar friendly snacks each month. Low-carb snacks can be very expensive to buy, and Keto Krate allows me to sample everything before I commit to a bulk order of a particular product. Plus, you can use code KRATE15 for 15% off your subscription!

Their boxes are always aspartame-free and maltitol-free. As a heads up, I will say not 100% of their snacks are grab-and-go; occasionally there’s a mix, or something that needs cooking/preparation. But most of the snacks come ready to stuff in your child’s backpack.

Hopefully, this list makes back-to-school diabetes management a bit easier for you and your child. And who I am kidding, these snacks are just as yummy for adults, so no judgment here if you eat some before they make it to the lunchbox!

Source: diabetesdaily.com

Should We Be Screening Every Single Child for Type 1 Diabetes Risk?

If Type 1 diabetes struck you or a family member, it may well have seemed completely random, unpredictable, and unpreventable.

It’s less random than it might seem—with a drop of blood, doctors can roughly estimate the risk of developing the condition, even in a newborn baby. And while the condition cannot yet be prevented, education and awareness can make its onset significantly less damaging, possibly resulting in lifelong health gains.

Screening for type 1 diabetes risk could become a routine element of childhood checkups, applied to all children. Should it be?

How Screening Works

There are, generally speaking, two ways of screening for type 1 diabetes risk.

The first, autoantibody screening, tests the blood for the immune proteins that cause type 1 diabetes when they attack the pancreas’ Beta cells. Autoantibodies emerge unpredictably, and are best assessed in early childhood, when the risk of disease onset is at its highest.

The second, genetic screening, tests a patient’s DNA for variations that are associated with type 1 diabetes. Genetic screening can be accomplished immediately after birth.

Screening of either sort rarely gives a definitive answer as to the likelihood that any one person will or will not develop type 1 diabetes—it places a patient in a bracket of higher or lower risk. One exception is when a blood test finds multiple autoantibodies present in one person, which can be said to indicate very early (subclinical) type 1 diabetes. In these cases, it may be years before the symptoms become noticeable.

Much of the data linking antibody presence with risk factors comes from the long-running Trialnet Pathway to Prevention study. TrialNet has been celebrated in the diabetes community for providing simple and free screening to so many. Click the link, and you can contribute to the body of knowledge by getting yourself (or a family member) screened.

Genetic and autoantibody screening can be used separately, but the most accurate projections use the two (along with any family history of diabetes) in concert.

The Benefits of Screening

Type 1 diabetes isn’t, so far as we know, preventable. So why screen for it at all?

Perhaps the single largest benefit to type 1 diabetes screening is the reduced incidence of diabetic ketoacidosis (DKA). When doctors, patients, parents, and caregivers are all aware that one patient has an increased risk, they’ll be more likely to identify hyperglycemia early, before it progresses to a critical state.

Avoiding DKA, a dangerous and incredibly painful condition, is just the start of it: studies have also shown that patients that got an early warning of the risk of type 1 diabetes also go on to have reduced A1c, fewer diabetes symptoms, and increased residual beta cell functioning. The earlier you catch the progression of type 1 diabetes, the healthier you’re likely to be in the coming years and perhaps even decades.

While researchers can’t always prove a causal relationship, mounting evidence appears to show that the severity of hyperglycemia at diagnosis can have a lasting and possibly even lifelong effect. In our recent article on diabetes and the brain, for instance, we learned that children that experience severe DKA at diagnosis have measurably worse cognitive impairment compared to children that did not have DKA. This effect lasts for years, and may be permanent.

And then there’s the game-changing drug teplizumab, which appears to delay the progression of symptomatic diabetes for years when given to patients that already have two or more antibodies. Those delays can be hugely valuable to families, meaning both enhanced health and emotional well-being. An expert panel recently voted to recommend that the FDA approve the drug. If teplizumab proves to be as effective as hoped, it would significantly strengthen the case for large-scale type 1 diabetes risk screening.

Teplizumab may just be the start, as doctors are working on other novel approaches to delaying (or preventing) type 1 diabetes. At the moment, for example, trials are underway to see if infants with a genetic predisposition to the condition will be less likely to develop the disease if given the probiotic B. infantis or insulin powder. Who knows what other therapies the future could bring?

Experiments with Universal Screening

At the recent American Diabetes Association Scientific Sessions, Germany’s Dr. Anette-Gabriele Ziegler discussed the results of two different experiments in universal diabetes screening. In these studies, all children within a certain area were tested for type 1 diabetes antibodies, regardless of family history.

The first, named the Fr1da study, tested children aged 2-5 during their regular check-ups in Bavaria, Germany. Only 0.29% of these Bavarian children got the bad news that they had the antibodies indicating subclinical type 1 diabetes.

While this was a very thin slice of the population, that knowledge still made a big difference. 81 tested Bavarian children went on to develop full-blown type 1 diabetes within the next three years; of those 81, only three developed DKA, an astoundingly low 3.7%. This was an immense improvement over the status quo – elsewhere in Germany, about 45% of newly diagnosed children developed DKA. And even that 3.7% seems somewhat inflated – of the three kids that suffered DKA, two of them belonged to families that declined diabetes education after receiving the positive test results.

In short, testing about 140,000 kids saved about 36 (and counting) from DKA and from whatever other long-term health deficits that acute hyperglycemia might have caused in the future. It also significantly reduced stress in the parents of newly diagnosed children.

A similar effort in Colorado, named ASK, delivered similar results. While only 0.52% of the participants were found to have subclinical type 1 diabetes, only 6% of them developed DKA, a vast improvement over usual rates.

Dr. Ziegler said, “We would like to screen everybody.”

The Downside of Screening Too Many

So why not start screening every child now? It costs money. Insurance companies will need to be convinced that it’s worth paying for.

The cost of screening may be significant, and the cost of follow-up education can be even higher.

Even if we can screen all children for type 1 diabetes, it’s not at all clear how many families should receive diabetes education, as Dr. Richard Oram of the UK’s University of Exeter expressed in a presentation at the conference.

Suppose, for example, that we had a universal genetic testing program – every newborn child in the country gets his or her drop of blood analyzed. At what level of genetic risk do you begin to apply education and intervention?

If you draw the line at the infants in the top 10% highest risk, you’ll identify nearly 80% of the kids that are going to develop type 1 in the coming years … but that’s only 2.4% of the kids selected for extra attention, meaning it’s likely a waste of time for the remaining 97.6%. On the other hand, if you only choose to educate the tiny minority of kids with the highest risks, you’ll waste less time, but ultimately only identify less than 10% of the children that will go on to develop type 1.

Public health experts are not ready to just brush aside all that education delivered to families that don’t really need it. And it’s not just a question of wasted time or money – as noted by Dr. Laura Smith, a clinical psychologist at USF, studies have shown that these screening programs can result in clinically significant levels of stress or anxiety for kids and caregivers alike. Parents will also often attempt to change their kids’ diets or increase their monitoring of their kids’ health, perhaps unnecessarily.

Profit and Loss

In reality, it will likely be the insurance companies that decide where to draw the line. The most important question, sad as it sounds, is whether or not testing children for type 1 diabetes risk is cost-effective.

Early research into this question tended to say that no, broad screening efforts are not economically worthwhile. A 2015 study concluded that screening would have to cost $1 or less in order to be viable (it’s a lot higher)—anything more would cost too much to justify the health improvements.

That study, however, looked only at the impact of reduced incidence of DKA, and not at the other benefits for patients. The University of Colorado’s Dr. R. Brett McQueen argued to the Scientific Sessions audience that this early study fell short of the mark, because screening is likely to offer many benefits beyond just DKA avoidance.

Dr. McQueen presented his own study, which assumed that screening would result in lifelong health improvements for patients with new-onset type 1 diabetes, such as improved A1c. While McQueen’s work confirmed that DKA avoidance alone was not enough to justify the high cost of most screening programs, those other benefits may tip the scales. Even an extremely modest improvement in glycemic control can make a big difference over the years, leading to many fewer diabetic complications and expensive interventions. And that’s before we even consider teplizumab, the potentially groundbreaking therapy that can delay onset for years.

The cost of screening is certainly substantial – Colorado’s ASK screening program ended up spending about $4,700 per case detected, a number that could be even higher when implemented elsewhere. But DKA and diabetes complications—think retinopathy and kidney disease—are pretty expensive too.

This type of math requires some guesswork. McQueen stated that if we want a rigorous accounting of how cost-effective early screening is likely to be, we’ll need about 30 years of follow-up data. Of course, we don’t have the luxury to sit back and wait for generations—“we need to make these decisions now.”

Conclusion

Today there is virtually no screening for type 1 diabetes risk factors in mainstream medical practice. There are many children (millions worldwide) that are at an enhanced risk of developing type 1 diabetes, and would stand to benefit from diabetes awareness and education.

Screening (and follow-up education) can have a significant positive effect. Risk screening has been shown to dramatically reduce the incidence of DKA, and is likely to improve diabetes management and reduce stress and anxiety. And the recent development of teplizumab, a drug that can delay the onset of the disease, may make early screening even more efficacious.

The most accurate screening would combine genetic testing at birth with antibody testing in early childhood, either once at age 3-4, or twice, at ages 2-3, and again at 5-7. But even a single test, either of genetics or autoantibodies, can provide significant predictive value.

Screening for type 1 diabetes risk could become a routine element of childhood checkups—if doctors and insurers can be convinced that it’s worth the effort, time, and money.

Source: diabetesdaily.com

3 Things Every T1D Parent Should Know (That Your Endo Hasn’t Told You)

This content originally appeared on Beyond Type 1. Republished with permission.

By Lauren Bongiorno

As the parent of a child with type 1 diabetes (T1D), do you ever feel like there’s more to know about diabetes than you could ever learn? You may have an attentive and caring endocrinologist but still find that there are gaps in your education as a parent. It could be tangible tools, holistic resources, or more support that is missing, putting you in a constant reactive state chasing highs and running after lows.

It’s like you’ve been handed the keys to a car and given a few vague, verbal directions of how to get to your destination. That’s far from the ideal set up for a road trip! You need a map, a full tank of gas, and snacks for the ride. The same is true for a journey from childhood to adulthood with T1D.

Today we are breaking down the top three cornerstones of our family coaching programs that will help parents like you ease the future roadmap for your T1D child.

 1. Challenge Everything

If your GPS tells you to take the main road, but you think the back roads would be faster, what would you do? Make your own route! One way isn’t better than the other, but the best route is the one that feels natural, easy, and meets your needs.

It is okay, and encouraged, to question what you’ve been told and follow your instincts. An endocrinologist is one of several resources available to you, but not the only resource. By actively participating in conversations with your child’s endocrinologist about their diabetes, you can become the leader of your child’s diabetes management and model for them what it means to be self-reliant and self-advocating.

2. Your Family, Your Rules

While there are certain rules of the road we all have to follow, like staying within the speed limit and stopping at red lights, you get to set the expectations within your own car. As the driver, you get to determine how loud the music is played and the frequency of bathroom stops. Your family has the flexibility to create the road trip experience that works for you.

Checking blood sugar and giving insulin are two rules you can’t change, but other strategies are more fluid based on your child’s unique patterns and needs. Some kids’ blood sugars go low after sports practice. Others have a delayed high. Some need a snack before bed, while some don’t. It might take some time to understand what your child’s patterns are, but it’s key to recognize that not all bodies are the same and there is no one-size-fits-all diabetes management routine. So, discovering what works for your child, and your child alone, is the primary goal.

3. Holistic Approach

When you get in a car for a road trip, it’s about more than just getting from one place to another. The drive is a whole experience of its own! The music, snacks, and pit stops along the way are just as significant.

Similarly, holistic diabetes management is more than counting carbs and giving insulin. The other macronutrients, fat and protein, have an impact on blood sugars too, but this is less commonly understood. Beyond food, exercise, sleep, stress, hormones, relationship to food, and mental health are important elements of diabetes management, which is why over-simplifying diabetes just leads to more frustration and challenges. A holistic scope that takes in all of the factors is the key to a deeper understanding and more empowered relationship with your child’s T1D.

As a parent, you already know that kids are unpredictable and being adaptable is basically a parenting survival skill. While adaptability is always needed, it’s possible to get diabetes from interrupting your child and family’s life as much. For more support on an integrative approach to taking care of yourself, your child, and their T1D, click here to download this free video resource.

Source: diabetesdaily.com

This Is Your Brain on Diabetes (ADA 2021)

The brain affects diabetes, and diabetes affects the brain, a complex relationship that goes in both directions.

For many patients, the brain-metabolism connection means challenges and health declines. Most people that have experienced hypo- and hyperglycemia are well aware of the way that blood sugar troubles can inflict brain fog and other minor short-term malfunctions. Unfortunately, that’s just the start of it. The cognitive dysfunctions associated with diabetes can become permanent.

The first days of the recent American Diabetes Association Scientific Sessions featured several sessions on the intersections between brain health and diabetes. Some presenters sketched out the scope of the problem; others suggested potential solutions. Patients with both type 1 and type 2 have a lot to think about.

The Vicious Cycle

At the heart of the brain-diabetes relationship is a negative feedback loop that pushes people towards bad decision-making and bad health outcomes. Hyperglycemia leads to both short- and long-term cognitive impairment, which leads to increasingly poor glucose management decisions, which leads to more cognitive impairment, a vicious cycle if there ever was one.

Australia’s Dr. Fergus Cameron sketched out this dynamic:

Source: ADA 2021 Presentation

This feedback loop helps define how and why brain issues tend to snowball as the years go by.

The Developing Brain

Diabetes can impact brain function at every age, but perhaps most important is its immense effect on the developing brain. Acute and chronic hyperglycemia during those early, critical years of development can easily cause lasting damage.

Many of the most important negative cognitive effects of type 1 diabetes seem to occur in the first days and weeks leading up to diagnosis. Just days after diagnosis, children already perform more poorly than expected on intelligence tests. “We’re seeing impacts right from the get-go,” said Dr. Ferguson.

The severity of hyperglycemia at diagnosis is also significant: children that are diagnosed during diabetic ketoacidosis (DKA) see much more cognitive impairment than children that never experience that critical state. That difference alone might mean as much as 6 points of IQ, on average.

We don’t like to dwell on immutable factors—today, you cannot change the circumstances around your diagnosis or that of a loved one. It is more important to people with diabetes to learn what they can do now to help improve their health and quality of life. The answer to that is clear: avoid chronic hyperglycemia.

Mental Issues Accumulate

The effect of chronic hyperglycemia is cumulative and comprehensive. As people with type 1 diabetes age, they perform worse on tests of executive functioning, IQ, information processing speed, and memory. The differences are bigger in high school than in elementary school, and the gap just continues to widen throughout adulthood. A 2019 study found that an incredible (and terrifying) 48% of older adults with longstanding diabetes displayed “clinically significant cognitive impairment.”

Dementia and Diabetes

Dr. Anna Marseglia, a neuropsychologist with Sweden’s Karolinska Institutet, took the baton to discuss cognitive impairment and dementia in old age. Most of her talk referred to patients with type 2 diabetes, although it’s possible that patients with other forms of diabetes could still benefit from her conclusions.

Diabetes is a major risk factor for dementia—in fact, the link between metabolic dysfunction and late age mental decline is so clear that Alzheimer’s disease has sometimes been called type 3 diabetes.

But diabetes is not destiny—the risk of dementia is significantly amplified by lifestyle.

The Power of Activity

Dr. Marseglia presented the results from her own study, a look at thousands of older Swedish adults with diabetes, to see if an active lifestyle might prevent progression to dementia. Researchers tried to track both the number of leisure activities that participants enjoyed and the strength and extent of their social connections. Would an active social life reduce the risk of dementia?

The answer was yes, and the correlation was enormous, as you can see in the graph below. “Inactive” adults with diabetes were vastly more likely to develop dementia than “active” adults, whose risk was barely higher than that of people without diabetes. Dr. Marseglia suggested that if all of the adults in the study had led “active” lives, as many as 48% of dementia cases could have been avoided.

Source: ADA 2021 Presentation

The study suggests that while both diabetes and social inactivity are hazards in and of themselves, the real danger is when those two conditions coexist.

Accordingly, Dr. Marseglia highlighted two broad strategies to improve one’s risk of late age cognitive decline. The first is to employ strategies that reduce physical cardio-metabolic burden: improved glucose control, healthier diet, exercise, weight loss, quitting smoking, and so on. The second is to create a kind of resilience within the brain through education, challenging work, and vibrant social activities.

The protective effect of an active life is physically verifiable. Adults labeled “inactive” actually have significantly smaller brains than active adults. Activity, by preserving brain volume, somehow overrides the vascular damage associated with diabetes.

An active life to fight dementia doesn’t just start in old age—good health, mental stimulation, and social activity early in life will also protect the brain from decline decades later.

Executive Functioning in Teens

Teens have a particularly tough go of it; typically, they are the age bracket with the highest A1c.

Anxiety, depression, and diabetes burnout are distressingly common in the teenage years. Such mental health issues can easily throw diabetes decision-making out of whack. As Oregon’s Dr. Danny Duke stated, “When we’re emotionally dysregulated, it affects all of our other executive functions.”

Executive functioning, explained Oregon’s Dr. Danny Duke, is the part of the brain that’s “in charge of making sure things happen when and how they’re supposed to happen.” It’s like “the conductor of the orchestra of our thinking.”

Good executive functioning is of paramount importance to all humans, but especially to those with diabetes, who must almost continually balance short- and long-term costs and benefits. And because executive functioning usually does not fully mature until age 25, it’s no surprise that teens can have so much difficulty managing their conditions.

Some teens have better executive functioning than others, and those that struggle to make good diabetes management decisions need as much help as they can get. Otherwise, the vicious cycle will rear its ugly head once again: poor executive functioning leads to reduced glycemic control, and reduced glycemic control leads to poor executive functioning.

While Dr. Duke focused mostly on the ways that executive functioning failures could lead to dangerous blood sugar swings, he had little doubt that the converse was equally true:

I’ve worked with a lot of these kids that are hanging up there in the mid-300s [mg/dL], doing the bare minimum necessary to stay out of DKA. When we get them back down into range, they’ll often say ‘Wow, I had no idea how bad I felt and how foggy I was thinking.’

A Family Affair

For kids and teens, good diabetes decision-making is a family affair. Dr. Maartje de Wit, of Amsterdam University Medical Center, pointed to several studies assessing the role that parental executive functioning plays in diabetes management success.

Naturally, in younger children, parents will make all significant treatment decisions, but even as children age, parents continue to play a surprisingly big role in treatment success (or lack thereof). Studies show that, for example, maternal executive functioning skills have a significant influence on a child’s A1c levels, and that both the father’s and mother’s involvement played a big role in delivering better glucose control, especially when the children had executive functioning issues themselves. This did not change as children aged, even as they presumably took on more of their own management decisions.

This sounds obvious—less disciplined kids need more help—but it’s not necessarily so easy to determine who needs help, and how to help them.

Identifying and Improving Executive Function Issues

Children and teens with subpar executive function, when asked why they can’t adhere to their diabetes treatment regimen, may say things like “I forget” or “I’m lazy,” or “I don’t know why.”

Whether by nature or nurture, executive function problems are often shared between parents and children. In a presentation aimed at medical professionals, Dr. Rachel Wasserman encouraged practitioners to consider disorganized or scatterbrained parents a real warning sign of potential executive function issues in children.

If you recognize these sorts of behaviors in your child (or in yourself!), it might be worth trying to work with your child to improve his or her executive functioning skills.

Dr. Wasserman recommended activities that require repeated practice and offer progressive challenges. That could describe schoolwork and related academic pursuits; it could also describe athletics like martial arts and yoga.

Today there are also a dizzying number of scheduling apps that people with diabetes can use to help enforce good habits. More old-fashioned techniques, like alarm clocks and post-it notes, can be equally effective. Dr. Wasserman cautioned that advanced diabetes technology, such as insulin pumps and continuous glucose monitors, as helpful as they can otherwise be, do not necessarily lessen the cognitive load on the executive functioning system.

Takeaways

Diabetes has a significant negative effect on cognitive abilities. In type 1 diabetes, this effect can begin very early in life, with the first bouts of acute hyperglycemia leading up to diagnosis. In both type 1 and type 2 diabetes, the damage wrought by high blood sugars is cumulative, and symptoms are likely to get worse over the years.

Hyperglycemia can also set a vicious cycle in motion, whereby high blood sugars cause bad decisions, which just cause more high blood sugars.

The best way for a person with diabetes to avoid cognitive decline, probably, is to avoid chronic and acute hyperglycemia—the more time you spend with your blood sugar in a healthy range, the more likely that you will avoid accumulated damage to your brain.

It also may be possible to strengthen executive functioning skills and make the brain more resilient to age-related decline by enjoying a robust social and intellectual life. Hobbies, education, challenging work, and community involvement—in short, an active and stimulating mental life, at every age—may protect against eventual decline.

Source: diabetesdaily.com

Technology is Great, but Most Kids with Diabetes Still Need More Help (ADA 2021)

Recent decades have brought incredible advances in diabetes technology, but children and teens are still struggling to meet recommended glycemic targets.

There are almost a quarter-million young people in the US with diabetes (more than 75% with type 1 diabetes), according to the American Diabetes Association. For youth especially, early detection and optimal management are of utmost importance; with many decades of life ahead, keeping blood glucose levels in check today can help reduce unpleasant (and deadly) diabetic complications decades down the road. Prudent diabetes management also has immediate benefits and can have a huge impact on quality of life.

What’s the scope of the problem, and what can be done about it? Scientists at the American Diabetes Association (ADA) 81st virtual Scientific Sessions relayed the striking results of several studies on the state of things today for kids and teens with diabetes. Here are some of the most notable findings.

Youth A1c’s Are Not Improving

It has long been the case, unfortunately, that the majority of pediatric diabetes patients routinely do not meet their treatment goals, most often assessed via quarterly A1c testing. A team of researchers across the US reported on recent trends in recently diagnosed youth, as part of the SEARCH for Diabetes in Youth initiative. The major conclusion?

HbA1c levels remained stable but higher than recommended across discrete cohorts of SEARCH youth with type 1 diabetes duration ≤ 30 months, particularly among non-white youth.

In fact, the average A1c levels among young people with diabetes remain quite high; despite rapid advancement in technology use and newer insulin formulations, the report shows no significant change between average A1c levels between 2002 and 2016. The average A1c held steady at about 7.9%.

How Much is Technology Helping?

Now, for some better news. It appears that early use of continuous glucose monitoring (CGM) technology is associated with lower A1c levels. As reported by Dr. Priya Prahalad of Stanford Children’s Health, newly-diagnosed youth (2018-2020) who were offered CGM initiation early on had markedly lower A1c levels than those from a previous cohort that did not initiate CGM therapy.

Unfortunately, while the A1c differences between the two groups were significantly different at 6, 9, and 12 months after diagnosis, the average A1c level was still at or above 7%, for a considerable proportion of study participants. These results underscore the value of CGM use in improving diabetes management in young people, but also demonstrate the need for more effective management strategies in this group.

Trouble at School

A report from Dr. Christine March and her team at the University of Pittsburgh illustrated the unique challenges that children face on school days vs. weekends. In this study, CGM data from hundreds of children with diabetes were analyzed to assess trends in blood glucose levels (specifically, the time-in-range, TIR metric) across hours of the day and night, as well as on weekdays vs. weekends. The main result?

For weekday school hours, median TIR (70-180 mg/dL) was 52.4%; only 34 (15%) of youth met a TIR goal of >70%… Weekday and weekend CGM metrics were clinically similar, though TIR was statistically higher and time high/very high (>180 mg/dL) lower on weekends… Notably, TIR early in the school day was nearly half of TIR during similar weekend hours, perhaps relating to sleep/meal schedules.

Moreover, the team looked at various attributes, like insulin pump use, duration since diabetes diagnosis, and A1c level to see if there was a connection with the time-in-range metric. They report that younger age, shorter diabetes duration, and lower A1c levels were associated with more TIR during school hours. Interestingly, insulin pump use appeared to have no effect in this study.

Technology and Diabetes Distress

Several researchers posited that youths with diabetes and their caregivers have very different perceptions regarding the emotional impact of advanced diabetes technology.

Can Tech Reduce Family Conflict?

One study presented this week sought to determine whether the use of diabetes technology devices improved “family conflict” in teens with type 1 diabetes. In this evaluation of 60 participants, researchers found lower A1c levels in those using closed-loop technology. The technology also led to a significant increase in caregivers reporting lower levels of family conflict surrounding diabetes management. Perhaps surprisingly, the teenagers themselves did not seem to think that family conflict had been reduced by the closed-loop pumps.

Does Tech Alleviate Diabetes Worries, or Exacerbate Them?

A second study suggested that advanced technology use may actually provoke anxiety in children.

Dr. Fatemah Abdulhussein and colleagues from UCSF evaluated whether the use of advanced insulin delivery systems alleviated worry and fear of low blood glucose levels among patients and caregivers. The major findings?

Longer duration of diabetes, duration of pump use, and duration of CGM use were all associated with higher mean worry scores [among children, but not their caregivers].

That’s the cruel paradox of childhood diabetes in a nutshell: the longer a child has had diabetes, the more stress it causes. And superior management tools may only add to the emotional burden, rather than alleviate it.

Management Success Still Leads to Peace of Mind

The UCSF researchers also looked at diabetes treatment satisfaction scores and found that the only variable in the study that was associated with a lower treatment satisfaction score was higher GMI (glucose management indicator). They conclude,

These data suggest that despite recent advancements in diabetes technology, FOH [fear of hypoglycemia] and diabetes treatment satisfaction still remain significant concerns and need to be addressed in clinical contexts.

smartphone to detect depression and loneliness

Photo credit: Adobe Stock

Parents Experience Diabetes Distress, Too.

A lot of burden falls on the diabetes caregiver, too, and understandably so.

A team of researchers based in Washington, DC and Nashville, TN looked at “parental reports of diabetes distress [DD], diabetes-related family conflict, quality of life” along with patient A1c levels. A key finding that that higher A1c levels in young people were associated with a higher incidence of parental diabetes distress, related family conflict, and quality of life. Notably, female caregivers were more likely to experience distress than male caregivers. Researchers summarize,

Importantly, parental DD is related to children’s glycemic control, suggesting that increased psychological support for parents with teens with DD is warranted.

The Takeaways

A1c levels remain steady at about 7.9% for young people with diabetes in the US, still considerably higher than what is recommended by major health organizations. Some research shows that CGM utilization and the use of closed-loop insulin pumps can help improve diabetes management. Of course, cost and access also remain barriers for many when it comes to technology access.

Sadly, even with the use of advanced technology, it appears that patients and caregivers alike experience a considerable amount of distress in dealing with the demanding nature of diabetes management. Perhaps patients and families would benefit from increased emotional support as much as improved access to diabetes technology.

Importantly, A1c levels stood out in several studies as important determinants in patient and caregiver treatment satisfaction, as well as distress levels. Glycemic control should remain a paramount goal, not just for short- and long-term health, but also for emotional wellbeing. Helping youth with diabetes achieve or exceed recommended targets is likely to help lessen the mental burden of diabetes management and improve quality of life and family dynamics in the long term.

Source: diabetesdaily.com

The PROTECT Study

This content originally appeared on Beyond Type 1. Republished with permission.

By Makaila Heifner

Let’s face it, there are a lot of research studies out there, and we mean… a lot. But one you should definitely know about is The PROTECT Study. Especially if you or a loved one was recently diagnosed with type 1 diabetes (T1D).

The PROTECT Study aims to understand how the investigational medicine, teplizumab, works in children and young adults who have recently been diagnosed with T1D, as well as assessing if there are any side effects while taking the medication. This treatment is still being evaluated in clinical studies and has not been approved by the FDA for treating T1D. In previous studies of high-risk individuals, teplizumab was shown to delay the onset of T1D an average of nearly 3 years (35 months).

Who Is Eligible for the Study?

This study will include 300 children and adolescents in clinics across the United States, Canada, and Europe that meet the following criteria:

  1. Age 8-17 years old
  2. Diagnosed with T1D in the previous 6 weeks
  3. Positive for 1 of 5 T1D autoantibodies (test to be done as part of the study) 4. Ability to produce a minimum amount of your own insulin (test to be done as part of the study)
  4. Otherwise generally healthy, with no other significant medical conditions, recent or history of infections, or taking medicines that might interfere with teplizumab

If you meet all the criteria, the next step is to visit a study clinic, where the study team will:

  • Discuss the study in more detail and explain what participation would mean for you or your child.
  • Talk through the potential benefits and risks of being involved in the study.
  • Ask questions and carry out medical tests to determine whether you or your child are right for the study and the study is right for you or your child.

If you and/or your child are interested in potentially participating in the PROTECT study, click here to find a study clinic near you.

Before the study begins, you/and your child must agree to and sign an Informed Consent Form which explains the study in detail, any potential risks or benefits of participation, as well as your rights and responsibilities as a participant of the study.

All study-related treatment and care will be provided to eligible patients without charge; however, patients will not receive any compensation for their participation in the study. Patients who decide to participate are able to withdraw from the study at any time for any reason.

Participants do not have to change their primary doctors as the study provides short-term study-related care only. Patients are encouraged to tell their regular doctors about taking part in a clinical research study. Some medicines are prohibited to take while part of the study so a patient’s doctor may want to contact the study physician to request additional information.

How Does It Work?

If you/or your child are selected to be part of this study, you/your child will be placed in one of two groups, either the teplizumab group or the placebo group (meaning you/your child will receive no treatment). Deciding who will be placed in each group is chosen at random by a computerized system, and neither you/your child nor the study doctor will know which treatment group you/your child was placed in. This is done so that results from the different groups can be handled the same way.

Over the duration of the study, you/your child will receive 2 courses of study medicine given by intravenous (IV) infusion. The IV infusion usually lasts about 30 minutes and will be given daily over 12 days on 2 separate occasions, 6 months apart.

The study will last just over a year and a half (the study reports the study will last up to 84 weeks) and require 36 study clinic visits, including the initial screening, treatment courses, and observation periods.

During visits to the study clinic, you/your child will be asked several questions and perform a series of study-related medical tests. These tests are done in order to understand how the treatment is affecting you/your child and how well the body is responding to the medication.

Identifiable information (for instance, name or address) will not be accessible to anyone who is not directly part of this study; additionally, The Sponsor (the company carrying out the study) will not have access to any personal information that is submitted through the study’s website.

Why?

The treatment works by interfering with the cells that destroy the insulin-producing beta cells in the pancreas. If the treatment successfully interferes with these cells (T cells) patients who are taking teplizumab may be able to continue producing their own insulin and reduce their need for insulin injections, have better control over their blood glucose, and experience fewer complications from T1D.

Visit theprotectstudy.com to learn more about PROTECT.

Source: diabetesdaily.com

Dexcom Share Etiquette

Life is safer than ever for people with diabetes; continuous glucose monitors, hybrid closed-loop insulin pumps, faster-acting insulin, and more accurate carbohydrate counting and precision medicine have saved thousands of lives and make the day-to-day with diabetes easier than ever.

One element of that technology that has been a godsend for parents and loved ones of people with diabetes is Dexcom Share. This feature of the G6 Dexcom continuous glucose monitoring (CGM) app allows the patient to share their glucose data with up to 10 other people, who receive all glucose levels, trends, and alerts to their cell phones 24 hours a day. But what is lifesaving for some seems too intrusive for others.

This article will outline Dexcom Share etiquette and what you should do if you’re in a sticky Share situation.

The CGM Revolution

Continuous glucose monitors save lives. What was unheard of only a decade ago is now ubiquitous in the diabetes community. Many people (thanks to widespread private insurance coverage and Medicaid expansion covering this expensive equipment in more states than ever) with diabetes wear these sensors on their skin, giving them up to 288 blood glucose readings per day.

More and more of these systems do not require calibrations, so kids and adults alike are more free from constant finger pricking, unpredictable blood sugars, and stubborn HbA1c levels without an apparent cause.

CGMs make life with diabetes easier, more predictable, and more manageable for patients and their caregivers. First introduced with the G4 Dexcom system in 2015, the Dexcom Share app has been revolutionary in that it allows loved ones of people with diabetes follow their blood sugars and be alerted to both high and low levels at all hours of the day.

It seems like a simple solution for kids, teenagers, and adults who may struggle with hypo-unawareness or to just act as a second set of eyes on an all-too-often complicated disease, right? Wrong.

Diabetes Is Personal

Diabetes and blood glucose data are personal. Some people are super open and accessible about their diabetes, but others are not. A 19-year-old away at college may be shy about sharing all of her blood sugar data with a new boyfriend, or she may be trying to exert her independence and prefer not to have her mom constantly texting her, asking if she’s treating her midnight low.

And while it seems counterintuitive (why wouldn’t we have as many safeguards in place as possible?), letting (mature) kids and teens learn to manage their diabetes on their own and step into their autonomy is important for growth.

While the feature is absolutely vital for younger children and people who suffer from hypo-unawareness, if you have a child or teenager who is very independent, mature, managers their diabetes well, and isn’t comfortable with the Share feature, it’s worth the conversation and shows you respect them if you’re open to not utilizing it. Ultimately, the decision is up to the person living with diabetes, and remember, people have been thriving with diabetes for decades before this technology ever even existed.

Safety Comes First

There are, however, caveats. If you’re struggling with open communication with your teenager, your loved one suffers from hypo-unawareness, or your child is traveling for the first time without you, the Share feature is an excellent way to stay alerted to overnight lows, stubborn highs, or worrisome trends that may need addressing.

It’s important to also remember the reason for the Share app: to better equip people with diabetes and their loved ones to protect the health and safety of the person living with diabetes. It’s not to nag, hassle, or judge them for their actions (or inactions).

Share followers should not criticize or belittle someone’s blood sugars; there are no “good” or “bad” blood sugars. Blood sugars are just information directing someone to what they need to do next (like take insulin, exercise, or eat something to treat a low).

The Share app is simply one more tool one can employ to improve their diabetes management and nothing more.

Tips for a Less Intrusive Share Experience

If the person with diabetes in your life is begrudgingly allowing you to follow their blood sugars via Share, here are some tips you can employ to make the experience less intrusive:

  • Always have a discussion with your child or teenager if you’d like to follow their blood sugars with the Share app. Do not hide it from them. They will find out.
  • Set the high blood sugar alarm high and the low blood sugar alarm low. If you set your follow alarms to go off at 160 and 80, your phone will constantly be buzzing, and you’ll constantly be texting your child/teenager asking them if they’ve taken their insulin or treated their low. Really only set alarms for safety, not to be a bother.
  • Use Share for a trial period. Test the system out, and if it’s stressing both of you out, turn it off for a while before trying it again.
  • If you notice your loved one is running particularly high or low, do not comment on trends unless they ask for advice or if they have an Endocrinologist appointment coming up, adjustments can be made then unless it’s threatening their health.
  • Do not text them to see if they’ve treated their high or low blood sugar unless it is jarringly so. If they are 78 mg/dL after exercise, you don’t need to tell them to drink juice, but if they crash in the middle of the night at a slumber party and their blood sugar is 39 mg/dL, it’s best to call immediately to make sure they’re okay.
  • Make this a fun, learning experience! Praise them for the progress they’re making, and remember, with diabetes there is no perfection.
  • Respect their boundaries, and if their thoughts and feelings on Share change overtime, revisit the topic and decide how you’d like to proceed together.

Everyone with diabetes is different, and their care and management will be too. Some people are more private about their blood sugars, while others enthusiastically request input from other people on advice and tips for improving their levels.

Allowing the Dexcom Share app into your life is a great privilege, but it shouldn’t be taken advantage of. Using it as a tool to help improve your loved one’s health and diabetes management can come with great benefits if approached with caution and a heavy dose of respect.

Do you utilize Dexcom Share for your loved ones, or do you share your blood sugars with family and friends? What boundaries have worked best for your situation? Share this post and comment below; we love hearing from our readers!

Source: diabetesdaily.com

The Value of Diabetes Camps: Building Skills and Grit in a Safe and Supervised Way

A few years ago, I attended a function for children and adolescents with type 1 diabetes (T1D) and their caregivers. A breakout session on type 1 at school was packed with parents of newly diagnosed children, most wearing the familiar look of worry and exhaustion that us veteran parents remembered all too well. These weary warrior newbies needed an empathic community and substantive guidance.

The panel was composed of a seasoned school counselor with type 1 herself, and two school nurses. Collectively, their years of experience were a treasure trove of information as to managing the complexities of type 1 at school. Despite their expertise, the fear and trepidation among the attendees were palpable. I felt like exclaiming “group hug!” The parents, some of whom had devoted grandparents along for support, seemed to have two things in common: fear, and a strong skepticism over whether it was all going to work out OK for their children.

How could school waters be tested with the uncertainties of bus travel to and from, recess, gym class, standardized testing periods, and school trips? For those families in which there was not a full-time nurse on staff at school, the worries were significantly amplified. How would oversight of insulin dosing occur and who would help their children during a dangerous high or low?

Sitting amid these parents I could relate to their vulnerability as I recollected the first nerve-racking days when my eleven-year-old son returned to school after his initial hospitalization. I could remember needing to catch my breath when I would see the school name on my caller ID. Most calls were that a low was being handled and not to worry. Other times, it was a request that I come and pick up my son rather than have him ride the school bus home with a persistent low. The best calls were to say that he had given his own injections and was showing more and more independence each day. With the right helpers in place, the scaffolds were being erected for him to become confident, strong, proud, and as self-sufficient as feasible for a young boy with a chronic condition.

Photo credit: Adobe Stock

The first time we saw our endocrinologist in an outpatient setting just weeks after diagnosis he asked our son, “Hey, are you going to diabetes camp this summer? You’ll love it!” I thought, what could diabetes camp possibly be? It sounded like the least fun camp imaginable. There was just one other type 1 child in our son’s elementary school. How many kids could there be to fill up such a camp?

Fast forward to the next summer after our son’s diagnosis as we arrived at the aptly named, “Camp Freedom” to find a lively campground with hundreds of kids and teens with type 1 diabetes milling about. We could spot insulin tubing, patch pumps, and glucose monitors on arms, legs, and bare midriffs. I saw a teenage girl with her diabetes alert dog. Asking her about her beautiful companion with his official vest, she shared that she had hypoglycemic unawareness. I did not know what to say. To have someone unable to feel an acutely dangerous low was unfathomable to me as a parent. Never had I felt as much love and respect for an animal as that diabetic alert dog steadfastly at his owner’s side.

As each camper lined up at check-in, an endocrinology nurse or doctor would obtain precise information as to daily insulin amounts, pump settings such as insulin to carb ratios, basal schedules, and correction factors. Adjustments were made to err on the side of caution to prevent exercise-induced hypoglycemia with the many activities for recreation and sport yet to unfold. As the days would go on, if a child was running too low from fun offerings such as zip lining, swimming, and gaga, further adjustments would ensue by the expert staff who monitored blood sugars day and night.

During the six-night sleep away camp, no cell phones were permitted so this was the first time ever in our son’s life that we could not communicate with him for an extended period. However, laying my head on the pillow on his first night away and realizing the peace of mind that the 2 AM finger stick and countless other checks throughout that long week were being properly supervised resulted in a feeling of immense gratitude for the nurses, doctors, and camp counselors. What other kind of camp could offer parents this type of reassurance and respite from caregiving while creating fun for their kids?

One of the most famous organizations in the nation, The Barton Center for Diabetes Education, Inc., offers girls, boys, and co-ed camps year-round. They hope to provide an in-person camp experience this summer and are closely monitoring COVID to determine the safest numbers of campers to have onsite. Other camps are running virtual programs.

For children and teens who have felt isolated or misunderstood since their diagnoses, diabetes camp often represents the very first time they feel joyful and normal again. Surrounded by hundreds of kids with the exact same condition, the solidarity that comes from a shared experience is the fastest path toward normalizing and acceptance of one’s condition. Beyond acceptance, the cultivation of grit and perseverance, in line with the writings of Dr. Angela Duckworth of the University of Pennsylvania, are key skills that any veteran T1D will tell you matter. This sense of plugging away or what Dr. Duckworth calls, “deliberate practice,” combined with a positive “growth mindset” as outlined by Dr. Carol Dweck of Stanford in her famous book, “Mindset: The New Psychology of Success” are byproducts of immersive, supportive experiences that emphasize challenge, skill-building, and persistence despite setbacks.

Erik Erikson’s stages of psychosocial development. Infographic: Very Well Mind

The psychosocial theorist, Erik Erikson, had a stage theory of human development. He believed that within each stage was a central “crisis” to be resolved and how well one emerged from the stage and entered the next was a function of the degree to which the crisis had been resolved. When my son was diagnosed at age eleven he was in Erikson’s fourth psychosocial stage: industry (competence) vs. inferiority.

If the messaging to an eleven-year-old with T1D is, this is too hard for you, too dangerous, too you name it, then the child would begin to think that diabetes was a significant limiting factor. That impingement on self-efficacy would leave an imprint on the stages yet to come and be a set up for learned helplessness, worry, sadness, frustration, and a lack of confidence. Conversely, if a child of this age is exposed to a supervised, supportive, inspiring community like one finds in diabetes camp, he will emerge stronger, more confident, and more willing to embark on new and challenging pursuits that showcase his competence in handling his condition.

As a therapist, I sometimes speak with parents with heavy hearts over conditions or diagnoses of their children. Often, the children are soldiering on in their own way and sympathy may be misplaced when a show of empathy would better fortify and empower the entire family. I am reminded of a race I once ran in Central Park in New York City one summer. I looked on in pure awe at a blind runner to my right flying past me. I saw his guide next to him giving him quiet direction and I wondered what kind of messaging and experiences this runner had internalized over his life to cultivate his courageous growth mindset despite a formidable obstacle.

Modeling a growth mindset themselves, parents of children with type 1 can let their children venture forth to be guided by experts such as those staffing diabetes camps. T1D youth will learn lifelong skills while having fun and parents will get a respite from caregiving along with the great reward of watching their children thrive with T1D.

Tara and son with type 1 diabetes

Photo credit: Tara Bryant-Gray

As I drop my 19-year-old son off this week for a socially distanced mini-semester at his university, I am grateful for his early experiences at diabetes camp, and subsequently in pre-college overnight programs. My son is stronger and more empowered because of these safe and confidence building opportunities which expanded his diabetes management skills and enriched his overall independence and development.

Source: diabetesdaily.com

Toddler Changes His Own Dexcom on TikTok: Advice From His Mom

TikTok has become more than just a place to dance along to the latest trend; it has become a platform for advocacy for many issues, and diabetes has received increased exposure thanks to this social media app. I couldn’t believe my eyes when I saw a TikTok of a very young boy putting on his own Dexcom G6! And he did it with confidence, bravery, and pride. I wanted to share Daxon’s story in the hopes that it inspires others as well. I reached out to his mom who was gladly happy to chat.

Hi Cassie, thank you so much for taking the time to answer my questions! I would love for our community to get to know Daxon a little better! He is such a great role model for other children living with type 1 diabetes (T1D)!

At what age was Daxon diagnosed and what were the symptoms?

Daxon was diagnosed exactly 1 month from his second birthday at 23 months old.

He started to get a bad temper spring of 2019 and we never understood why. He would get so upset so easily and we just thought it was because of terrible twos. In July, he threw up twice one morning for no reason and out of the blue. He started throwing up at nighttime multiple nights in a row and only at night. I took him to his pediatrician, and they told me “it’s probably the stomach bug, it’ll pass” but I told him “but randomly like that? It doesn’t make sense”.

After about two weeks, it stopped until August. He threw up one more time in the morning and then stopped. Once again, we had no idea why. At the end of August he started drinking and peeing excessively. What really gave it away was that he was drenched from head to toe in pee after a 2-hour nap period one day and that was it. I checked his sugar and it was 461 mg/dL (borderline DKA).

How did you as a family adapt to your new normal?

Honestly, we are still trying to adapt. We take it day by day because it is always changing. The one thing about diabetes is that no matter what, it is different each day. Even if you do the same exact thing, sugars will change.

Did you change Daxon’s and/or your family’s diet at all? What are his favorite go-to foods that don’t wreak havoc on his blood sugars? I’m sure lots of moms could use some tips!

I did not completely change his diet, but I do swap stuff out for healthier carbs and a lower glycemic index. He does low-carb bread, cheese, and crackers instead of mac-n-cheese, Go-Gurts, Two Good yogurts instead of the higher-carb ones, chicken meatballs instead of chicken nuggets, Fairlife milk instead of others  (because of his milk allergy, but it is better carb-wise also), keto-friendly cereal because others spike so much that I cannot get it down for hours, keto-friendly bread only because the GI level is so much better. There are some other changes, but the family has not changed any really. He does still eat candy, it is just more in moderation than before.

His go-to foods are pork rinds eggs, a brownie bar called “Good to Go”, keto-friendly ice cream, yellow bell peppers, broccoli, really any vegetable, cheese sticks, pepperoni, lollipop suckers. Any time we are out Chik-fil-A, grilled chicken and fruit are a must. That is all I can think of right now.

Photo credit: Cassie Daniels

At what point did you start using the Omnipod and Dexcom G6? How did Daxon handle that? 

The Dexcom was a month after being diagnosed and he did not handle it well at first. We would have to hold him down to get him to let me put it on. It was a nightmare but once he watched a friend of ours put her’s on and she told him “you have a robot just like me” he got used to it and now it is normal. When his phone tells us it’s time to change it, he’ll tell me “robot needs changed” and he will 100% do it solo now which is amazing.

The Omnipod was a little different. His first endo wouldn’t approve it because they thought he would take it off, so we had to wait but once we switched to a different hospital, they got him on it right away; so, he was about 7 months in when he was able to get the pod. At first, once again — NOT a fan and it was horrible — but once he learned it meant “no more shots” he was perfectly fine with it (sometimes). We will scream — and I mean scream  — the song “Baby Shark” so he will not hear the clicking for the needle and that seems to help also. He is currently working on putting the insulin in his pod so he is super excited about that.

I know I personally prefer shots, but am often intrigued by the control some pumpers get. Do you find using the pump helps make blood sugar management easier?

The pump for us personally is a lot better for different reasons. Omnipod allows such a small dose, so even 1 gram of carbs he would get some insulin, but with shots, we would have to round up or down, which meant [more fluctuations for him]. Also, in the middle of the night, being able to give him insulin without even touching him has been great. I hated waking him up to poke him with a needle. Also, when on the go we can dose from the front seat of the car. However, if he ever decides that he wants to stop the pump and go back to shots I will support him and what he wants 100%.

@cdaniels2015

95% completely solo 💙💙💙💙 He’s get the hang of this soooo quickly 😭🙏💙 #typeonediabadass #BigBoy

♬ Bang! – AJR

I couldn’t believe my eyes when my diabestie, Hillary Emmons,  sent me this TikTok of Daxon changing his own Dexcom! I am so impressed and inspired! At what point did he express interest in doing that?

After about six months of being a type 1, he has always been curious about everything. He has been checking his own sugar with the meter since about 6 months in when needed to be checked. And recently he was really showing interest in the Dexcom and doing it solo. He did half of it one day and then the next change he did it completely on his own, all I did was hold it and help place it. I never asked him to do it because I didn’t think he was ready for that task yet but that day he told me “I do it” and that was it. Now he is showing interest in some of the Omnipod stuff, which is amazing because he feels in control.

I give you credit as a parent for letting him own his management and giving him the confidence to know he can manage his disease! What would you like to tell other parents about how to get children to want to be a part of their daily care?

Make it positive, make it fun, and make it normal. We have the JDRF bear and we practiced on that since being diagnosed. At first, we used it so he could understand more of it. We also got his big brother and all the other family members involved since day one. We check everyone’s sugars, so it is normal for everyone. All the children in our family (our boys and our 3 nieces) have been very curious about it since day one.

I see you are using TikTok as a platform for awareness and this one video alone got over 103,000 likes! Kudos! What would you like people to take away from your videos?

I want people to know the signs of T1D and to normalize it. I hate when I see people hide that they check their sugar or even giving their self insulin. I want to help parents have a voice for their children because doctors sometimes do not listen, and we need to be loud for our children and to follow their gut. I have a lot of people say that he encouraged their children to try putting the Dexcom on solo and I love that it is helping other children also. One of my TikToks potentially saved a child from dying. Her sugar was almost 1000 mg/dL and she was in DKA and doctors were surprised she wasn’t in a coma. Children should not die for people [not being able] to figure out what is wrong!

Does Daxon enjoy making the TikTok videos? I think “injecting” some humor and fun is the best medicine of all! And one you can all do together as a family!

Daxon loves showing people his stuff. He knows it makes him unique and he loves seeing others who are like him. So, when people duet his videos and they show their Dex or pod it’s helpful for him also to see that there are others like him.

Photo credit: Cassie Daniels

What else does Daxon like to do with his free time when he’s not managing his diabetes and TikTok’ing?

Daxon is a typical boy and I mean ALL boy. He rough houses with his brother, loves to color, help with dishes, cooking, loves to read books, play outside, ride his 4-wheeler, and absolutely loves cuddling with me. I think him being a T1D made our bond even stronger.

How does Daxon feel about being a TikTok sensation and knowing that he is helping to inspire many other children just like himself!

I have told him many times that he is helping other children and I don’t think he really understands what it means yet, but he always smiles and says “they have a robot like me” or he’ll go “yay that makes me happy”. I ask him “do you want to make a video?” and normally he’ll tell me “yessss let’s make a video”. I will never make him make TikToks so if he tells me no then I’ll leave it alone.

I ask this in every interview! Do you think they’ll be a cure in Daxon’s lifetime?

100% honestly I do not foresee a cure ever. They make way too much money from insulin (when it should be free, but that’s another story for another time). I wish there would be a cure, but I don’t see it happening.

Daxon

Photo credit: Cassie Daniels

What advice helped you? Can you pass it along to parents of newly diagnosed children?

My advice for parents is:

  1. Take one day at a time because it is an always-changing, never-stopping, headache of a disease.
  2. Do your best and never get down on your child for their blood sugars. That is the one thing I will never do to Daxon, anytime he has “bad” sugars, I never express it to him or show it on my face because it is not his fault, so I don’t want him to feel like he is failing.
  3. Always tell your child they can still do anything they like and never change activities. Just change foods to help [manage sugars during] the activities. For example, we took Daxon and his brother to a trampoline park and I knew his sugar was going to drop. He started at 170 mg/dL and dropped to 50 mg/dL. I was prepared with milk, yogurt, chocolate, and others, so he could still have fun and be a kid.
  4. Try not to have a fight if sugars are not in range, because everything is magnified if high or low. So what I do with Daxon if he is high or low and has a temper tantrum, I ignore it and let him do what he needs to do. Once he calms down, we discuss what happened and I explain I understand he doesn’t feel good but he doesn’t need to act that way.
  5. Treat them like you would any other child because diabetes does NOT define them.

Where do you see going with your advocacy and awareness on social media or elsewhere? Do you have other plans in the future?

I would love to bring more awareness to this disease. I would love for there to be a law that pediatricians must check A1c every year or every other year. They check your iron, and they check lead so why not diabetes? [Some] pediatricians think that younger children cannot get diabetes until at least six years old which is not true. It is ridiculous because a child’s death is avoidable if people were more aware of the signs and doctors tested when they should.

Thanks again Cassie, we really appreciate you taking the time! I look forward to continuing to follow Daxon’s journey and see how many kids he inspires along the way!

Source: diabetesdaily.com

Rare Until It Happens to You: The Kycie Terry Story

This content originally appeared on Beyond Type 1. Republished with permission.

By Jordan Jendricks

Jamie Terry doesn’t know what exactly it is about her daughter that resonates so deeply with people. But there’s something about the combination of her curly blond hair, striking blue eyes, and the circumstances around her unfortunate and preventable death that have incredible staying power, inspiring countless others to action.

“There have been many times that I’ve thought about that. There are sick children all over the world, why Kycie? But there’s something about her and I truly believe she was here on a mission. She’s still on a mission. I just think there’s a reason behind it all.”

Because even now, five years after her tragic passing, strangers from around the world still reach out to the Terry family about their little girl. They remember Kycie and her story, which has reached thousands and saved an untold number of lives. Kycie’s father, Josh, has lost count of how many other parents have thanked him, explaining they, too, might have lost a child if not for his daughter’s story.

“I don’t know why it went as viral as it did. I think she just has a face, too. And you can see how heartbreaking it was and how hard she worked to try and get back. If you lose a child or you lose a family member, to think that they died for nothing, it’s that much harder. To know that she’s made a difference in other people’s lives and helped save other people’s lives, and saved a lot of heartache and struggles, it’s more doable.”

Kycie Jai Terry was the second youngest of six children and the only girl. After four boys, Jamie remembers crying tears of joy over her fifth ultrasound and the realization she would finally have a little girl. She remembers her daughter as a vibrant child, who loved to dress up, ride bikes and catch lizards; who was a little bit of everything and unique, as her name suggests.

“I don’t think I realized at that time, but now I think there’s a reason that she has this unique name because you Google her and she pops up and it’s because she needed to make a difference in the world.”

Where Things Went Wrong

Kycie

Image source: Beyond Type 1

Kycie was diagnosed with type 1 diabetes on January 30th, 2015 while in DKA (diabetic ketoacidosis). Where her story differs from many who live with undiagnosed type 1 and go into DKA is that she ultimately experienced cerebral edema, a condition where fluid builds up around the brain, causing pressure and swelling. This complication was occurring unbeknownst to the healthcare providers treating her at the time, wreaking havoc on Kycie’s brain and nervous system as she slept in her ER room bed. Less than 1% of pediatric patients in DKA experience cerebral edema, making it rare, though this statistic was of little comfort to the Terry family. As Josh puts it, “It’s always rare until it happens to you.”

As he recalls, Kycie’s initial symptoms started with a headache, then a stomachache. It seemed like she might have had a stomach flu, then strep. But she didn’t get better with antibiotics; in fact, she worsened. She didn’t want to eat, she only wanted fluids, and she was suddenly remarkably skinny. The Terrys felt an urgency to take their daughter to the hospital as her condition only seemed to get worse. She was extremely lethargic once there, and Josh recalls her fruity breath, a tell-tale sign of ketones. Sure enough, the doctor quickly revealed the cause of the problem: “She has type 1 diabetes.”

But Kycie’s blood sugar was difficult to control. Later, the Terrys would learn that during this time in the ER, doctors were focusing solely on treating her diabetes without realizing that she had experienced any brain damage, or that it was growing worse. With blood sugar readings over 1,100 mg/dl (61 mmol/L), Kycie was in severe DKA and needed to be life-flighted to a children’s hospital five hours away. After landing, she suffered a seizure on the ambulance ride from the airport to the hospital. Four hours later, she was intubated, on a ventilator, unresponsive and in a diabetic coma.

An MRI was completed after Kycie was in a coma for over 24 hours, revealing for the first time the cerebral edema. Doctors told the Terrys that they didn’t expect her to live, but Kycie fought, ultimately coming to breathe again on her own before waking up. She spent the next 111 days in the hospital to relearn basic functions, after which she was able to go home and live with her family for another month and a half, though her life was entirely different. It was suddenly a feat for the five-year-old to hold her own head up, smile, or roll over by herself. Josh remembers feeling torn and heartbroken to see his daughter’s life suddenly so difficult.

“I remember sitting up there and thinking what a horrible situation she was in – a situation I wouldn’t want to be in. If I was in that place, I wouldn’t want to live that life,” he shares. “At the same time, she’s my little girl and it’s my job to protect her and my job to be there for her. It was a really hard place to be.”

Kycie

Image source: Beyond Type 1

The family continued on, taking care of their daughter and treasuring the few good times during otherwise long days. They documented their new normal, sharing feel-good moments and milestones on social media.

Kycie then caught a virus that led to pneumonia and another hospitalization, setting back some of her progress and making her less responsive. Though she was able to return home after growing stronger, in the early morning hours of July 11th, her oxygen levels were extremely low and her parents were poised to take her to the hospital yet again. Before they could leave the house, the second youngest Terry passed away peacefully in her father’s arms. She was a few months shy of her sixth birthday.

Her Legacy Lives On

Kycie is well-known now in the diabetes community, her story having touched so many all over the world. Beyond Type 1’s Warning Signs Awareness Campaign, which began in 2016, was inspired by her story and the reality that both misdiagnosis and missed diagnoses are problems that can be solved through education and awareness. Josh and Jamie both can’t underscore enough the importance of being able to recognize the signs and symptoms of type 1 diabetes.

“To get an early diagnosis is so critical. If you can catch type 1 before DKA, you’ve saved yourself the possibility of brain damage,” Josh explains. “And so that early recognition is so vital, not just because of the scariness of DKA, but because of the unknown that comes with it.”

Jamie reflects on her own lack of knowledge about diabetes in general and how Kycie’s situation truly opened her eyes to a chronic illness that affects so many on a daily basis.

“I knew nothing about it. And the thing that’s crazy with Kycie is it all happened so fast. Within five days, she had a traumatic brain injury,” she explains.

Jamie sympathizes with everyone who manages type 1 diabetes, having gotten a small taste of the complexity of the disease while caring for Kycie’s type 1 diabetes (T1D) the short time she was able: “That’s what is heartbreaking to me. Anyone that ever comes up to me and tells me they have type 1, the first thing I say to them is ‘I’m so sorry’ because it’s so much to take on. And we didn’t even get to.”

The Terry family now advocates for safe and early diagnoses of type 1 diabetes, sharing about Kycie whenever they can and working with local hospitals to help improve type 1 protocols. In Josh’s practice as an optometrist, he lectures others in his field on type 1 and the importance of recognizing changes in vision as potential signs. Their family is continually touched by the outpouring of love for their little girl and all they’ve been through, the community they’ve found through their loss and the surprising amount of good that has come out of an otherwise tragic situation.

As Jamie puts it, “There’s no greater title than ‘Kycie’s mom.’ It will always be hard to live without her, but part of the healing journey has been to know that she has saved and continues to save lives.”

Source: diabetesdaily.com

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