Blood sugar is most frequently understood by non-medical staff in relation to diabetes (with the main symptom hyperglycemia). Diabetes is well-known, it’s normal and for as long there has been diabetics around, blood sugar has most frequently been associated with that diagnose.
There happens to be a very similar condition out there though, which is a lot rarer, and it reacts almost like its polar opposite. Because it’s so rare, you shouldn’t expect the people around you to have a solid knowledgebase when it comes to the non diabetic version – hypoglycemia. The word hypoglycemia (low blood sugar) is often misunderstood in oral speech as hyperglycemia (high blood sugar, diabetes).
Disclaimer! This article is a personal story about hypoglycemia and diabetes, and how I feel the two diagsnosis intersect and have done so in my personal life.
Today we’ll try to highlight their diferences and similarities in a way that’s easy for you to digest and understand, as well as a few examples from our own day-to-day life here at Hypomom.
If you are reading this post, you should know the consequences of giving a child in severe hypoglycemia insulin. In essence, the most important difference between the two, is the following:
- If your child suffers from Ketotic Hypoglycemia: No insulin must be given, ever!
- If your child suffers from Diabetes: Insulin must be given if the patient’s bloodsugar is high, and carbohydrates must be given if the blood sugar is low.
This vastly important (but easily missed distinction), often leads to great frustration to many hypoglycemia parents when they repeatedly have to go through scenarios as below:
- Scenario 1: Insulin assumption: “Well your child has low blood sugar, so they just need a little insulin, right? It must be because my girlfriend-uncle-spruce-father-aunt-child-after-school-girlfriend has diabetes. Then just make sure you eat healthy and avoid sugar”
It is not just ignorant parents who do not catch the difference between diabetes and hypoglycemia. The following episode occurred as a result of a misunderstanding between the paramedics and the healthcare professionals at the hospital:
- Scenario 2: Misunderstanding hypoglycemia for hyperglycemia: The nurse came running with a syringe of fast-acting insulin to my unconscious child in severe hypoglycemia…….. There was another child named Noah, just like my son, with diabetes, who was hospitalized with hyperglycemia in the same hospital section
In the paragraphs below, I’ll give you a quick overview of just how similar, life with diabetes and life with hypoglycemia can be!
1. Talking Chinese to a Danish nation
When my children were diagnosed with ketotic hypoglycemia, I found the international patient association Congenital Hyperinsulinism International. This group offered plenty of hypoglycemia support from like-minded hypoglycemia families, who also struggled with severe hypoglycemia. Yet, somehow, when navigating the day-to-day life with my family, my friends and all the regular people around me, I felt lonely still…
… like an imposter, trying to navigate the world of normal, knowing that our lives were nothing like everybody else.
I missed being able to talk to people who spoke my language, face-to-face, about blood sugar issues, lack of sleep, fear of hypoglycemia and how to navigate both the healthcare system and the hierarchically hospital culture where we as moms acts as the lowest in the food-chain.
I needed to talk to someone who understood the feeling of overshadowing guilt when my kids’ hypoglycemia was so bad, we ended up in an ambulance. And for God sake, I couldn’t show my feelings in the hospital… What if they actually believed I was causing the hypoglycemia?
I felt like an alien, trying to tell “ordinary” people how a bad CGM shift had ruined our morning, and how a big banana before bedtime resulted in absolutely no night’s sleep, due to a massive blood sugar drop caused by a blood sugar spike. It seemed as if I was speaking a foreign language no one really understood. Not even my closest family.
I saw myself articulating perfectly fluid phrases in chinese to a nation speaking only danish.
The only patient group out there, I knew would understand a few of my chinese phrases, was the diabetic community.
Without thinking too much of it, I had become a weird-rare-disease-mommy-snob. My children were categorized as suffering from a life-threatening condition, and I had spent the first few years telling EVERYONE around me that my children’s disease could NOT be compared to diabetes (and to be honest – do you blame me? After all, they had the benefit of several decades of medical research into their condition. I felt left behind). I was thinking of diabetes as an “easy-to-handle, and easy to manage” diagnose. Rather than focus on the things we shared (insulin pump, CGM, the lack of sleep, the worries and the fear of letting go), I found myself focusing only on the fact that we were different.
However, in my desperate attempt to find anyone out there who may have been going through some of the things we did (did I mention the CGM and the fear of letting go?!), I started browsing some of those wonderful support groups for diabetics that are available online, in the search of someone to connect with! In fact, these two publications, written by Natasja Kingod, a post doctoral research scientist from Steno Diabetes Center in Denmark, illustrates the importance of online diabetes-communities.
- “Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review”
- The tinkering m-patient: Co-constructing knowledge on how to live with type 1 diabetes through Facebook searching and sharing and offline tinkering with self-care.
Over the past 3 years, I have been keeping up with other parents’ struggles to stabilize their diabetes children’s blood sugar online.
It was in one of these diabetes support groups that I met my mentor, Jacob Petersen, who is a diabetes professor at Novo Nordisk and the father of a wonderful little girl with diabetes. Take a look at this great article “Towards a cure for type 1 diabetes” featuring Jacob talking about work and his little girl Vita.
2. Dosage of vital and lifesaving medicine
When parents of diabetic children dose insulin, they dose from a calculation based on the current blood glucose and intake (or expected intake) of carbohydrates and the child’s activity level. If the child does not eat the amount of carbohydrates that have been given insulin to (or chooses to go out and participate in hours of straining physical activity), it can result in too much insulin given in relation to the amount of food consumed and the child’s activity level. This may end up causing a state of hypoglycemia.
1: Preventive Hypoglycemia (carbohydrates & physical activity)
This type of hypoglycemia is relatively predictable as the parents can easily see how much the child has had to eat, and the level of activity they engage in. Here, a quick intervention will be an extra intake of carbohydrates.
However, another state of hypoglycemia can not always predicted:
2: Non-preventive Hypoglycemia (nightmares, puberty, stress, fevers, etc.)
Cases such as if the child has had nightmares at night, puberty, stress, fever, extreme cold, extreme heat etc. can affect the blood sugar. As with hypoglycemia patients, it is different if the baby gets high blood sugar when these things happen or if they end up with low blood sugar. These types of hypoglycemia can be hard to prevent and avoid.
Ketotic hypoglycemia parent’s dosage vital medicine consists of carbohydrates, g-tube nutrition, cornstarch or a combination based on the child’s current blood sugar and activity level. We dose the food at the dining table and pray that our kids will eat the life-saving food. If the child for whatever reason doesn’t eat, they will likely end up in hypoglycemia and one of the following two remedies will be needed:
- Treat with juice, sweets or other fast carbohydrates
- If the child has a g-tube, you can give both give Glycosade, SOS or cornstarch
Just like diabetics, no ketotic hypoglycemia patient is the same. My blood sugar crashes before rising, when I try to treat my hypoglycemia with fast carbohydrates. My son is a bit more extreme version of me, and my daughters body is acting totally opposite of us.
I have tried to illustrate it for you:
My point is: No diabetic or hypoglycemia patient is the same! It is dangerous and ignorant to expect them to be.
3. Trick or Treat
When your child with diabetes or hypoglycemia is in a state of hypoglycemia, you know you have to handle the situation correctly! Both in relation to your child’s physical situation, but also your child’s mental situation. Savannah had a phase where she would only eat sausages… Yes, of all the food in the world, she chose New York style hot-dog sausages.
The carbohydrates in sausages and meat in general is very limited. Perhaps your own little golden nugget is in a phase where he or she WILL ONLY eat lollipops. Beside the frustration of your child stubbornness and choice of food, you also have to deal with your child’s blood sugar response to the treatment of hypoglycemia. It can be divided into 3 bullets:
- Treatment with fast carbohydrates
- Treatment with slow carbohydrates
- Treatment with slow and fast carbohydrates
Juice and fast carbohydrates is great to get the sugar up, but it is important to get some slow carbohydrates with it, to make sure it does not crash soon after the blood sugar spike. The slow carbodyrates stays longer in the body, and ensures a saftey net of carbohydrates, when the bloodsugar is returning down from a blood sugar spike.
Ketotic hypoglycemia patients often experience a severe hypoglycemia-crash if they only treat with fast carbohydrates. To be honest, it is like peing in your pants when you are freesing. It is warm at first, followed by a much nastyer cold.
Like all other children, a hysterical attack can be physically exhausting. A hysterical attack in the case with the sausage-loving-Savannah, would have been created if I tried to force her to eat what would be best for her bloodsugar.
We KNOW what is best – but it’s just not easy to convince a very independent and big 3-year-old girl who has just started in kindergarten, and who feels that the world is her oyster.
Sausages, Nutella & Compromises
Savannah agreed to dip her sausage in Nutella while cooperating to a bolus with cornstarch through her g-tube. She was satisfied, and we handled a case of ketotic hypoglycemia with an emergency treatment including both fast- (nutella and sausage … sigh) and slow carbohydrates (cornstach mixed in water, given through the g-tube).
If I had decided to sit still and just wait it out. Wait for her to eat her oatmeal (even if she didn’t want to), the situation would have escalated from a case of mild hypoglycaemia (her blood glucose was 3.3, ketones 1.4) to a case of severe hypoglycemia. (blood glucose below 2.5) triggered by a hystrics 3 year old.
4. The Rollercoaster Ride
About 10 years ago, there were this infamous Snicker ad rolling on TV’s in advertising spots around the world, featuring a wide array of characters, all acting like hilarious stereotypes when they don’t get their food.
An advertisement like that, while obviously satirical and humorous in nature, quite effectively shows how low blood sugar affects your mood. In one particular scenario, Jeff – an ordinary man turns into a hangry hormonal diva monster (starring no other than Liza Minelli), as a result of low blood sugar.
The advertisement gives a picture of what many diabetes and hypoglycemia patients experience every single day. Common to diabetes and hypoglycemia patients is the fact that fast blood sugar drops can affect the child emotionally and physically. Some children only respond physically, others psychologically, and some respond to both physical and mental.
Playgrounds, Slides & Adrenaline
I couldn’t possibly put a count on the number of times I’ve found Noah bathed in sweat in the playground, where his blood sugar has taken a mountain dive after a 20th trip to the slide, only for him to then fold over and land in the sand. Noah, being the energetic young man he is, is a bit of an adrenaline junkie which affects his blood sugar immensely, and often. Before the playground trip I would have tried to have him covered through food and cornstarch so he would be able to withstand the onslaught of adrenaline, but no matter how much we’ve worked towards having him protected, there’s the odd episode where our preparations just wouldn’t cut it. Noah has an absurd and admirable knack for being fully functional while on extremely low blood sugar levels. He can run and play with a blood sugar level of 1.7 and the only symptom we can spot, is a little shake on one hand, after which, time and time again he’ll be completely soaked with sweat.
And then there is our Savannah, who often strikes us as quite the little drama queen. Our little girl responds both physically and mentally when her blood sugar drops and her ketones is rising, which makes her extremely sensitive. We often catch her reaction in situations like the following behaviors:
- Emotional rollercoaster rides
- Fear of ordinary things in day-to-day life (riding the bike for instance)
To illustrate a few examples from our day to day life, where Savannah has been struck by a scenario with low blood sugar:
- “MOMMY! Im sad. I don’t feel good”
- “I miss grandma.”
- “I’m afraid of falling of my bike.“
- “I want a red cup, not a purple”
- “I don’t want to be a little girl!”
- “Why did the ant die yesterday?”
- ”My tummy hurts!”
- “I don’t want to be Savannah today”
Other times she just sits down and looks into the wall, after which she starts crying utterly untiringly, whereupon she eventually gets stunned that she cannot eat because of stomach ache and a intense headache. Situations like these, are great examples of when you’d want to give your right arm in return for someone to talk to, who has gone through the same as you.
5. The Fear of Letting Go
It’s a common time of fear and frustration for any new parent, when it’s time for them to hand over their precious baby to either a kindergarten, or let their child be looked after by a nanny.
Parents of diabetes and hypoglycemia kids also experience this, although with the kicker of the diagnose. Our concerns are based on completely different worries, such as:
- Do they truly understand the insulin pump and the medication plan? (or have they been nodding off? After all, it’s our child’s life that’s in play here)
- What are we going to do if the CGM falls off? Do they remember how to aply a new one?
- What are we going to do if the institution decides to rely 100% on CGM and don’t make actual blood sugar measurements?
- Are they able to handle if Emil, Martha or Mads have a birthday party in the kindergarten and they serve cake or popsicles?
- Can they figure out how to correct, or do we end up with a sky-high blood sugar, or subsequent hypoglycemia?
- Can they calculate how much cornstarch or insulin should be dosed when calculating the activity level when they have their annual football tournament?
- Will they be able to spot the symptoms of hypo- or hyperglycaemia, or will they think my child is just having a bad day or is moody?
- Can I attend a meeting with the phone turned off?
- Will my child be able to ask (or yell) for help when they feel the hypoglycemia or hyperglycemia?
- Can I allow myself to call and ask if everything is ok for the 3rd time today, or will it be reprehensible?
Summary: Diabetes Versus Hypoglycemia
Diabetes and hypoglycemia are two diagnoses that are vastly different from a physiological perspective. Diabetes gives high blood sugar because of a lack of/or a limited production of insulin, and ketotic hypoglycemia patients struggle with the opposite: low blood sugar. Ketotic hypoglycemia can be a symptom of a wide range of conditions, but is often idiopathic, meaning: No known genetic cause.
Our everyday lives, worries and our lives with the two diagnoses though, have many similarities that opens up the possibility that we can support each other when we encounter challenges, or we need to talk to like-minded parents.