Parents Suffer But Children With Diabetes Suffer More

I’ve been active in the Diabetes Online Community for an entire decade, literally since my twins were born. I’ve noticed that parents suffer a lot due to having children with diabetes. I’ve always had compassion for this because I could empathize and did empathize with my own parents growing up–it is gut-wrenching to see your child develop and live with an incurable, life-threatening illness. I know what it feels like to grow up with diabetes as a little girl so when my little girl was diagnosed, I felt strong emotional and physical pain. Type 1 diabetes in a child IS hard on parents.

However, something I’ve long wanted to say that has more weight now that I’m also a parent of a child with diabetes is that parents do well to remember that no matter how much suffering you’re experiencing, it’s worse for your kid.

Since I was 10 years old, when my sister was diagnosed, I’ve heard the following from type 1 parents (I never heard my parents say these things, thank goodness):

“Kids are resilient, it’s so much harder for the parents”.

“I’m glad my child got it early, they don’t know life with type 1 so this is much easier.”

“Children are different, high blood sugar doesn’t bother them much.”

“It’s so tough for adults who are diagnosed because they didn’t grow up with diabetes and get used to the needles and everything.”

These comments, while they might be someone’s valid opinion, for which I’ve never received an explanation that makes enough sense to me, indicate a lack of empathy and ignorance on the part of the parent, towards the type 1 child.

Parents are adults (or ought to be) and so they have much more in the way of resources with which to cope with difficult situations. I’ve been the kid with diabetes and I’ve been the parent of a kid with diabetes and I think it’s harder to be the kid. You still have worry, fear, and increasing awareness about how diabetes affects your life and you have to deal with it without completed brain development and before you master many other tasks.

We look at children and they play, they smile, they laugh, and we tend to forget that deep down they think and feel very deeply. Often, we talk to others about how they’re doing and we’re only giving out our perception versus the reality according to that child. So we have to be aware that in the midst of our suffering, it is our child who lives with this disease. It will move out of your home one day, but not your child’s body. Your child knows that and so while you’ll get a break one day, they know they won’t. You’ll likely worry for them their entire lives, but it won’t be the same. In my case, I’ll live with it forever alongside my daughter but I can’t carry it for her so she’ll have to bear all her own burden and I have to respect that reality.

Amidst your suffering, don’t give your child the impression you’re suffering more than they are.

As a kid, it was annoying for me to hear adults tell each other about how their job was the hardest and the diabetic kids were just living it up as normal kids. I did the teenager eye-roll, which was invented precisely so that kids would have a way of physically coping with the desire to throw something across a room when adults showed they forgot what being very young was ever like. Kids don’t have an absence of suffering, they just show it differently.

If diabetes is bad, then more time with it can’t be good. Impossible. So, that’s my thinking on the topic of it ever being a good thing that someone gets it sooner versus later. Damage adds up over time. It’s simple arithmetic and statistics. Damage is bad and who knows what someone’s personal threshold is for damage turning into a complication.

High blood sugar still affects kids, even if they say they can’t feel it and even if they can still be good at sports like I was, despite running high numbers. Children struggle to pinpoint their symptoms, this is why pediatricians get trained in the specific ways children describe certain sensations. They also have acquired less potential for neuroticism in their short lives so you’ll not hear so much complaining from them the way you will from an adult. Deep down, the symptoms they feel affect them. And at a cellular level, they’re absolutely being affected, the effects of which may not be very noticeable until they’re adults who must now take on this huge burden of accumulated damage.

I’m constantly wowed by the things my kids say, evidence that I too can forget their capacity for nuanced and complicated thoughts and feelings at their tender age. What children with diabetes need (speaking as a former child with diabetes) is to be asked about how they feel and what they think. You might discover they don’t care if someone tells a diabetes joke (that outrage might just belong to you) and they might feel profoundly sad or tired. Try not to speak for them. Don’t tell others that your child is empowered and handling this well. They might feel that you’re misrepresenting their experience and that makes it hard for them to tell you if they’re having a particularly hard time–they don’t want to make you out to be a liar. Listening to them talk about their diabetes from their perspective is probably one of the most helpful things you could do.

The Challenges of Managing Two Diabetics

It’s been tricky managing my daughter’s diabetes alongside my own. Here are some things I’ve found particularly challenging:

There’s Only So Much Room Up There

There’s only so much space in my head and I’ve always hated taking notes and logging information. I have lower conscientiousness–in the form of organization skills than I’d like so I have struggled with laziness regarding doing these things.

But when managing my diabetes and my daughter’s, there just isn’t enough that I can reliably commit to memory. One thing that helps is that I’ve synchronized our schedules. We give insulin at the same time and eat at the same time (I homeschool so this works well). I also teach her what I’m doing as I do it and that helps me when I’m trying to keep things straight.

Double the Emotions

My daughter’s blood sugars are stellar but every so often when there’s a high or low and she feels awful, it doesn’t matter if I’m 80, I feel awful, too. And that’s been tricky to cope with because too much feeling awful is a recipe for a disaster. So I’ve been trying to just breathe and not get too caught up in those moments, as they are temporary. There are moments of despair though, like if I’m high and she’s low and our allergies are flaring and I’m trying to figure out if we can afford stuff and if I have the energy to pack more than one Frio with all the supplies and pre-cooked low carb food in a large backpack for a park on a hot day. Sigh.

Who Did I Just Inject?

It can be hard to remember who I just gave an insulin shot to. Especially around dinner time when I’m busy finishing a hot meal and setting the table and timing it all with my husband’s arrival from work. I’ve asked my daughter, “Did I just give you a shot or was that me?” Scary, right? I’ve had to nearly slap myself on some early mornings to make sure I’m fully alert and mindful.

Mindfulness is crucial. I have to make sure I don’t switch our doses. I can’t give her my basal or bolus dose without turning things into a life-threatening situation. So I’ve learned to inject only once I’m fully present. If I am not or if I’m rushing, I stop myself and wait until I can inject safely. If someone is talking to me I ask them to stop. If there is a lot of commotion, I remove ourselves to another room.

The same thing happens with checking blood sugar. “Were you 104 or was that me?” It’s easier to keep track of whose blood sugar is whose now that she checks her own blood sugar, though.

We have different doses, different insulin correction factors, different glucose needs to correct lows, and I have to remember my diabetes is very different from hers right now. I’ll go higher and lower much more easily so I can’t mimic her schedule completely. I have to remember to check more often and still remember to check her at the right times. She still makes some of her own insulin and I probably don’t.

Exhaustion

Sometimes I just get purely exhausted. This is mostly due to the physical hit I take from waking up in the middle of the night for our blood sugars. Now, in most cases like ours, I’d say the other parent should be getting up to check the diabetic child and that way everyone shares the “burden”. In my family’s case, my husband works 12 hour days doing hard, outdoor physical labor in construction with dangerous equipment, sometimes on high scaffolds–my point is that he needs to not be sleepy during the day so that he doesn’t make a critical error and lose life or limb (he’s already lost a tooth and his wedding band and almost lost an eye and a finger). You understand.

Some nights, I get up twice for my daughter and twice for myself and that kind of interruption to sleep is brutal if repeated too often within a week. My lymph nodes swell and I start feeling like I have a cold.

Master Mind I Am Not

Forgive me, the kids are really into Star Wars, lately.

Due to being the diabetes expert and stay-at-home parent, all the diabetes stuff automatically falls on my shoulders. My husband and I have a plan for using the weekends as training times for him because he needs to be able to do and know all I do and know. It’s intimidating for him because he sees that I get intimidated sometimes, and I’m an expert in living with type 1 and this is our dear little girl. But if we get a habit of synchronizing our giving insulin and stuff, him taking over on weekends seems like it can cause me to get out of my routine and screw up my flow, so there is a lot of creative trouble-shooting we’ll have to do to work things out. Mainly, I have to work hard to remember my own diabetes. You’d think this wouldn’t be an issue after so many years, yet here we are.

It’s hard to know exactly what it’s like unless one lives with type 1 and also manages it in someone else. If you’re like me, your mind is constantly analyzing and accounting for various factors like food, illness, stress, exercise, insulin doses, and more and when you’re doing that all the time for two people, it can be overwhelming and one person’s diabetes may suffer as a result. In our case, it’s been mine because that’s what parents do.

The Cost of Two Diabetics

The toughest part of everything is something I won’t go into too much because people paying for one case of type 1 diabetes can already imagine–the cost of two diabetics in one household. I grew up with a type 1 sister and these days, it’s a completely different ballgame to pay for two type 1s. We’re talking tens of thousands of dollars. Geez, makes an incredibly tough medical condition almost pale in comparison.

Pity Me Do Not

I like being understood but please don’t pity me. I’m so glad to have a wonderful family and to know how to keep my daughter and I well-managed. This hard work leads to focus, dignity, and gratitude. And in a blink of an eye she’ll grow up and I’ll only be managing my diabetes, once again. Though If I could magically manage both forever, so she wouldn’t have to, darn it, I would lol.

Due to writing this post, I can see what we need. To adopt a strict write-it-all-down habit where our every detail is responsibly tracked. Forcing out my own stubbornness (I hate logging!) won’t be easy but as is evident from all I’ve shared: necessary, it is!

(Sorry, again.)

How to Stop Fearing Discomfort

To stop fearing discomfort we can arrange for it and face it head-on. This is easier than being thrown into the deep end against your will and will result in a better grasp of what we’re made of.

To put this in context and why I write about it on a diabetes blog, let me give an example:

Many people recognize that lowering their carbohydrate intake is beneficial to their diabetes management and overall health. However, they are caught by the fear of discomfort that will arise from giving up favorite foods, spending energy on reworking recipes and grocery lists, and sticking out like a sore thumb in social scenarios involving food.

As someone who has gone through all the above and come out happier and objectively better off, as a result, I can confidently say that the thought of doing something uncomfortable is actually more uncomfortable and challenging than it is in practice. Why? Because our fear of discomfort is very real. We, humans, are hardwired to avoid inconvenience, deviation from social norms, and hard work, even as we discover that confronting all these can be immensely rewarding. We’re funny creatures like that. Some of these characteristics are at the root of all discoveries and inventions that have come about but other aspects of our nature are dangerous in terms of hindering potential growth. So we need to constantly seek to create the right balance.

Marcus Aurelius, one of the great stoics, would sleep on the floor to remind himself that the fear of discomfort is greater than the actual experience of it.

You could try it. Or you could try something similar.

Choose something uncomfortable such as:

  • skipping TV for a few days
  • turning off your phone for a few hours every day
  • getting up at 4 am for a week
  • saying “hi” to everyone you meet
  • eating two simple meals a day for a week
  • sleeping on the floor or couch for two nights a week

Why do we derive value from activities like camping and fitness challenges? These activities are largely uncomfortable, yet many are called back to them year after year. Do they help connect us with our inner strength and give us confidence about our ability to do without certain comforts? There is a peace in knowing that one can “do without” and that we can survive pain and extreme fatigue and inconvenience.

Women who have never given birth are generally more afraid of the pain of birth than women who have been there before. The latter have survived the experience and are comforted by that fact.

It’s uniquely trying to be a person with diabetes who relies on insulin. We cannot stop taking it without dire consequences and should never attempt to. And I believe that for many, this reality leads to a destructive kind of vulnerability. I find that too many people with insulin-dependent diabetes often feel quite helpless, overly reliant on others, and almost in a state of panic over their permanent situation.

As a result, I think we could really benefit from the practice of stoicism. Combatting feelings of vulnerability can fuel our strength and resolve for our challenging way of life. Instead of mere victims of a disease, we can face up to the realities by being creative about ways to protect ourselves in certain scenarios, turn our energy to joining or supporting those trying to figure out how to survive tricky circumstances or cope with potential challenges, and we can accept our reality and let it make us better. Adversity can be a great teacher if we embrace the lesson. I’m all for not learning the hard way, except if you look all around us, it seems that too many aren’t learning the easy or hard way and maybe a more self-directed and intentional route to wisdom would help.

Recently, I carried out a carnivore diet experiment for 3 months. I realized I could be happy despite giving up so many pleasurable foods. I learned that I could have the discipline that I previously thought I could not have. I found that indeed, less could be more. And when I stopped the food experiment with the diagnosis of my daughter’s type 1 diabetes, I found that those 3 months helped to prepare me for the great emotional, financial, physical, and mental challenges ahead.

I wake up every night at 2:30 am to check my daughter’s blood sugar. I spend most of my free time cooking so that my entire family eats nutritionally rich and delicious homemade food for every meal. My family spends way over $10,000 on medical costs per year. There are no vacations. Clothes and shoes are bought used. But let me tell you what: I am happy and I don’t fear discomfort like I used to. Most days, I fear things worth fearing, which feels healthier and motivates me in the right direction. Then acting in the right direction actually leads to improvements and fuels more happiness so I know it’s a better way of functioning for me.

I strongly believe it can help people with diabetes to get comfortable being uncomfortable. Do it for a while and you’ll notice that when the lights go out and everyone is in an ugly state of despair, you’re ok, in fact, you’re lighting a candle and having a great time.

2 Reasons Why I Split My Basal Insulin Dose

2 Reasons Why I Split My Basal Insulin Dose

More Even Coverage

The first reason is obvious and common–it helps provide better “coverage”. However, I take Tresiba and most providers do not encourage splitting the dose of that insulin due to its approximate 42-hour action profile. When I took one dose, I had an extreme drop in blood sugar at one point of the day and didn’t like that.

So, I was splitting it like this at first: 6-8 units in the morning and 3-5 at night. I check at random times, often at night and things seemed to be working very well. Then I discovered through trial use of two different CGM systems that I was dropping in the early morning hours while I was sleeping. Sometimes I would stay around 30 for an hour before waking up. Other times the graph simply indicated that I dropped to the 30s or 40s and then rose on my own (thanks lifesaving liver!) to about 60 or 70 by the time I got up.

Is this why I’ve been waking up really tired and groggy and with a headache for such a long time? Sheesh. Maybe I should just be grateful I’m alive…

Anyway, after that, I tried flipping the dose around giving the larger one at night and the smaller in the morning. This makes the drop happen around dinner for me–and it’s also a more moderate drop, I guess I need a bit more insulin in the afternoon as opposed to the middle of the night. It’s certainly safer than a blood sugar dip while I’m asleep and not plugged up to a CGM of any kind.

Not surprisingly, I’m much more chipper in the morning since I figured this out.

I share this extra bit in case anyone out there splits their dose and isn’t aware of nighttime lows–beware and check at different times during the night to make sure there are no consistent lows happening without your knowledge!

For Safety

As for the second reason I split my dose, it has to do with safety. Before I took Tresiba I took Lantus and I before I split the dose, I didn’t, and you know what happened to me, twice? I accidentally gave about 20 units of Humalog in place of Lantus. Both of these instances were awful and involved a ridiculous amount of grape juice. I can’t even smell grape juice today without gagging. The fear though, that was the worst part.

After that, when I started splitting Lantus, if I were to ever draw up Humalog to the dose of Lantus, I would be giving half that amount and I’d manage the emergency where I was instead of finding myself being rushed to the I’m-going-to-bankrupt-you-ER.

Tresiba requires less in terms of daily units of insulin for equal strength so if I ever goof up with Humalog again (I don’t plan to) then I will be giving at most, out of habit, about 6-8 units of Humalog or R insulin and I can handle either of those doses with glucose tablets that I always carry on me.

 

My Thoughts On Diabetes “Scare Tactics”

We should first define the scare tactic. I think that a scare tactic is the use of a lie or deception with the intent to provoke fear of a negative outcome in order to motivate or manipulate behavior.
Many diabetes “scare tactics” aren’t scare tactics, at all.
If one shares a truth, however vague and incomplete, the negative feelings felt by a recipient is not the sharer’s responsibility. If we share a lie, we’re complicit but still not entirely responsible. The burden of responsibility to fall for a lie should still lay at the feet of adult individuals. You can be lied to but you don’t have to accept a lie.
 
A scare tactic is, in my opinion, something that works best on those who are still mentally developing (children) as well as the naive and gullible who don’t do their own research or lack confidence, and the mentally compromised (whether by retardation or mental illness). 
 
What happens to most people is the information they know of or fear may be true is prodded at and they become emotionally stimulated. Many people lack agency. This includes the ability to take full responsibility for what one chooses to believe and how one reacts to incoming information. If you think you lack agency I suggest taking steps to increase that very adult quality. (I’ve had to do this as an adult so if this is you, you’re not alone).
 
Just because something is shared with a representative image that lacks context doesn’t mean it is saying what people interpret it to say. That’s one of those logical fallacies people commit all the time. Don’t read further into an image and assign it more meaning than it can possibly provide. You can guess, but how can you be sure if something is too vague? Your interpretation is only giving all of us a window into your perspective. It may be an oversimplification or a symbolic message that leads to more exploration into a topic or idea. Because an image lacks so much context and explanation as opposed to an essay, many interpretations can come out and I think responsible adults need to not make assumptions but instead educate themselves and their children on what is real and true. Simple images can help spur awareness that leads to important discussions and revelations on a topic, that’s why they’re used. You don’t have to like them but saying they’re inherently harmful is totally false.
 
Every time I see something that scares me, I try to take responsibility for my reaction to it and find out if there is any truth to it and if fear is warranted. This is the only way to really protect ourselves. If I find that fear is a reasonable response, then I figure out what changes I need to consider to benefit myself and my family. I teach my vulnerable young children that they’re not to take anything as truth until they have properly looked into it and spoken to a trustworthy adult about it, first. And I try to act like a trustworthy person so that they’ll always come to me. I also don’t let them run wild on the internet by themselves so that they’re not exposed to words and images they cannot fully comprehend, yet. It’s not your job to take care of my kids or me, it’s my job. 
 
As for those suffering from “scare tactics”, make yourself less vulnerable by educating yourself, toughening up, and then doing what you know you should do to serve yourself well. It seems to me that images that provoke fear due to some underlying truth are most frightening and upsetting to those who know deep down that their actions are not serving them. There is such a thing as well-deserved guilt. It doesn’t have to be detrimental if you use it as a guiding light. I’ve felt guilty plenty of times and used that feeling to guide me towards wiser behavior that improved my health, relationships, and life overall.
Protect those who are truly vulnerable from these images you think are potentially harmful by communicating with them and being someone worth trusting. Protect yourself by owning all that is yours: your thoughts, feelings, and actions. You’re in control and only you decide if you’re a victim or not.

Feeling a Disturbance in the Force

“A disturbance in the force” is how I like to approach the topic of feeling lows. I think that for me, it accurately describes subtle symptoms of lows that are not immediately obvious.

For example, most of my lows start out with certain symptoms and then those symptoms evolve with increasing severity. But sometimes symptoms of lows are masked by a number of possible factors including but not limited to:

  • exhaustion
  • major stress
  • excitability
  • nervousness
  • being in a hurry
  • being under the influence

I’ve found over the years that I do a better job than ever before when it comes to sensing low blood sugar. And the way I do it involves asking myself if I sense a disturbance in the force. This means I tune in to my body for a moment. I mindfully scan myself real quick and I check for:

  • increased/uncomfortable heart rate
  • sweating
  • slight hunger
  • sense of urgency (hence the famous lows that occur while cleaning)
  • weak core muscles
  • poor attention and slow thinking

If I’m feeling confused and irritable, I usually pop a glucose tablet in my mouth because for me, those are symptoms of being very low and I don’t mess around when that’s a possibility.

Checking for my heart rate is, for me, the most reliable because as I get lower, my heart races faster. Eventually, it starts to beat out of my chest. However, that’s how I feel when I’m giving a presentation or doing high-intensity exercise so a blood glucose meter is needed to confirm in certain situations.

I treat lows differently based on circumstances. If I’m driving, I don’t check, I get a glucose tablet and pull over, first. If I’m alone with the kids or in another vulnerable situation, I quickly get glucose before fumbling with a meter. What if I only have time to ingest the glucose? I’ve never gone unconscious from a low in the almost 25 years with type 1 but maybe that’s partly due to the precautions I’ve learned to take.

The overwhelming majority of my lows these days are gentle ones in the 60s. For those, I confirm by checking and giving a small measured amount of glucose so that I only bump myself back up to the 80s.

It’s tough being mindful about our bodies at times but trusting ourselves when we have a split second thought about a “sense” we’re getting might be a valuable early warning we can act on to help keep us safe. Getting in the habit of “scanning” our body for symptoms is one I highly recommend.

How to Do Easter With Diabetes in Your House

Too many people seem to go overboard on Easter candy, in my opinion, and as a result, their kids do, too. The effects of sugar are such that if your child has any major stress happening, they might be tempted to sneak candy in when you’re not looking and this can wreak havoc on blood sugars.

Trying to dose for and cover candy doesn’t usually lead to any consistent positive results, either. Unless you’re ok with a 160 mg/dl and in that case, therein lies our fundamental disagreement.

Either way, havoc-wreaking on blood sugars is a very big deal and is to be avoided for your child’s immediate and long-term wellbeing. It’s not “ok” if it’s often happening because we’re letting it by doing things that make success highly unlikely, you know? Like, if it usually doesn’t go well, why keep doing it?

Here are some ideas on how to celebrate Easter if you do (or don’t) have diabetes in the house:

  • Make a special roast or something that you don’t eat every day.
  • If you’re a Christian, here’s a reminder that you obviously should know where to put your focus and this can help you avoid too much emphasis on all the other Easter activities.
  • Bake a low carb treat to have after dinner. This splurge isn’t going to mess up blood sugars and there isn’t going to be a bucket of more of it tempting you or your child for the next few weeks.
  • Plan a fun activity. It takes creativity, especially if you have kids of different ages (though they all have different personalities). Talk to your kids and find something the whole family can enjoy.
  • Start a new tradition. This also summons creativity but it’s worth it. Kids are ok leaving behind something like typical Easter egg hunting with candy if there’s a worthy replacement. Some people stuff eggs with coins, others do erasers, stickers, and other small toys.
  • Put on music.
  • Bring a festive attitude–it’s infectious to your child and other family members.

Here’s what I’m considering (my kids are 9):

I am thinking about filling eggs to put around the house with numbered instructions for a treasure hunt. The kids would have to find all the eggs, put the instructions in order, and then answer riddles and questions for clues to the treasure. I don’t know what the treasure is, yet, but I think that it won’t be as fun as the treasure hunt itself, especially if it involves me getting up early to hide more clues around town. We did that once for my husband, Alex and the kids thought it was the greatest thing we all ever did. It takes effort but you gotta admit, it sounds fun, right!?

You can even plan for the treasure to end up with your church service. I’m not religious but for those who are, that sounds like an excellent idea to me! Unless it’s really early in the morning, then you’d have to get more creative, I guess, like starting the hunt on Saturday and ending on Sunday. Or the treasure could be a small gift that’s waiting at home. This works for all ages because you can make simple or hard questions and riddles and keep the locations as close to home as you want (living room or backyard is totally sufficient for very little ones).

Your kids will enjoy all this quality living that focuses on relationships, things of special meaning, and enjoying that which nurtures us and they won’t need the powerful effects of sugar to soothe or stimulate them. Yes, it’s hard with everyone doing loads of candy and chocolate but you can do different and maybe others will join you over time in tweaking the way we celebrate Easter and other food and kid-centric holidays.

We have to lead the way if we don’t like “how things are done” instead of just complaining about it all or bemoaning the consequences.

They Say Kids Need Carbs to Grow

And yet, my 9-year-old daughter, who I measured this morning, has officially grown 2.5 inches since she started eating very low carb 4.5 months ago.

Things that make you go “hmmm…”

 

Children With Diabetes Deserve Insulin Concentration to Meet Their Needs

Young children with type 1 diabetes face a serious conundrum and that is that the available insulin is often too concentrated for their needs.

As a result, endocrinologists wanting to avoid terrible lows (and subsequent lawsuits) in these little ones order parents to feed a certain number of grams of carbohydrate per meal or they convince parents to put their child on an insulin pump, which can dole out smaller increments of insulin to meet their requirements.

However, the high number of carbs many type 1 kids get these days is a dangerous thing for these children because it crowds out essential protein and fat and can lead to weight gain and directly paves the way to roller-coaster style blood glucose management that I promise you, is worse for the child than the parent–no matter how much work and worry is involved on their part.

In the case of an insulin pump, not everyone wants this technology which comes with concerns about tubing issues and scar tissue development and also, not every family can afford one.

Why isn’t insulin made at different concentrations? I mean, it is, but mostly to meet the needs of the type 2 diabetes population which generally has very high insulin requirements. I’ve talked with many type 2s who use in one day, the amount of insulin I use in a week. This isn’t a judgment on them, it’s me pointing out that adults are getting their needs met in this regard and children are being left behind because why? Is it that they can’t advocate for themselves and their parents are being misled by pediatric endocrinologists who don’t know better? Pretty much, I think. One may argue that they grow up quick and then they don’t need such small insulin quantities but childhood health is essential to the rest of one’s life and so optimizing their care while they’re young is morally imperative.

There is a solution for those who want to give their child a smaller amount of carbohydrate and who don’t or can’t use an insulin pump. Diluted insulin. Special diluent fluid is provided free upon request from insulin makers and shipped to your nearby pharmacy. You can do it yourself or have a healthcare provider do it (if you can convince them to). The diluted insulin means you can dose to correct and cover for your child without the elevated risk of sending them low or needing so many extra snacks. This offers the potential to lower their carbohydrate intake, leaving sufficient appetite for what drives growth in a child–protein.

Regarding growth, look up the science, there is nothing indicating your child requires a lot of carbohydrates to grow. I think this is oft repeated mostly due to the above phenomena or lack of time and willingness on the part of physicians to do the proper research as well as their overreliance on what they’re told by other physicians and by governing associations. My daughter, on a very low carb diet, just shot up over 2 inches in 4 months. Before that, she was on a moderately low carb diet for a long time and her height is over the 90th percentile. Her bones and musculature are impressive. Her hair is thick and long, her nails are strong.

Aside from adequate nutrition, kids also need something else to grow to their full potential and that’s normal or near normal blood sugars, which only low carbohydrate diets achieve and which diluted insulin in children enables.

Diluted insulin could be a service pediatric endocrinologists provide to parents of young children with type 1 diabetes if we demanded it. I admit it’s intimidating to do one’s self. First, we have to educate ourselves and then them. Health care professionals feel really bad for us because they know what type 1 diabetes means in the long run for our children and they know the demanding lifestyle we parents lead (because we advocate well for our own suffering–lack of sleep, anyone?) but they’re not being very brave or ethical by ignoring what is going on with kids these days. Too many aren’t thriving!

Not only do most type 1 children have poor blood sugar management, but many are also gaining excess weight. This doesn’t bode well for their future and it’s not fair that adults have appropriate insulin and children don’t. As parents, we have to fight for our kids. Maybe I’m completely wrong. Fine. Maybe you should find out if any of this is true and if so, I implore you to think and discuss the topic with others. I was one of those kids with high blood sugar and weight gain after diagnosis and it made me extremely depressed and unmotivated, totally slowing down the trajectory of my life which has only got back on the rails by a bunch of miracles, sweat, and tears.

I’ve had enough of this poor treatment of children with diabetes and will not stand for it when it comes to my dear daughter. Children deserve medicine that is dosed for their size. They deserve myths to be expelled by our careful investigation and attention to the matter. And they deserve normal blood sugars.

Teaching My Kid How to Recognize Low Blood Sugar Symptoms

If a minute passes while I can’t locate my type 1 daughter, I kind of freak out. She doesn’t know what a real low blood sugar feels like and that makes me nervous. In the few months since she’s been diagnosed, her lowest blood sugar has been 58 mg/dl and at the time I tried to get her to describe how she was feeling but she said she felt perfectly fine.
She doesn’t like me panicking, and I don’t either, but lows are serious and one can’t ignore that. It’s only been four months so I think as we get into more activities this Spring and Summer, we’ll have more opportunities to learn how to cope.
Once she does get a reading in the low 50s or below I hope to get her to pay attention to the symptoms so she can start recognizing lows the way I do.

About My Typical Low Blood Sugar Episodes

I have about one low blood sugar a day. These are usually not below 60 though and they’re very slow moving so they’re very rarely a bother. (Slow moving because I follow a low-carb diet which removes almost all threat of fast-moving, scary lows).
However, I think it’s valuable that I can sense them physically because it helps keep me safe and I want that for her, too.
Here’s what my low blood sugars feel like:
As I slowly drop (fast drops feel different), I’ll first start to feel better–like super healthy, good energy, and this is when my blood sugar is in the 70s. I don’t know why but I feel like superwoman in the 70s. Then I’ll start feeling a bit weak and hungry and feel a sense of urgency thanks to an elevated heart rate from an adrenaline surge–that’s when I’ve typically hit the mid-to-low 60s. If it continues to the 50s, every symptom will increase in severity and I might start trembling. Since I was a kid I’ve grabbed a piece of paper with my thumb and forefinger to check for trembling–makes it clearer. I may now also get a numb tongue, which is weird. The 40s feel awful, with tightness in the chest and impaired cognitive abilities. The 20s and 30s are rare but I have experienced them all while conscious. They feel like I’m disassociated from my body, slightly drunk, and heading towards the impending emergency shutdown of the body–on the way to unconsciousness to try and conserve energy for necessary organ function and to preserve life as long as possible (my drama-filled guess anyway). 
I tell my daughter what my symptoms are but have let her know that hers could be different.

Confirm With Meter or CGM to Be Sure

I’m teaching my daughter that while recognizing the symptoms is useful, checking blood sugar is still important because symptoms can overlap. For example, being nervous or even very excited produces a rise in certain hormones and the symptoms of jitteriness, fast heart rate, sweating, weakness, and anxiety can all feel very much like low blood sugar.
Sometimes a high can be confused for a low, too. So, it’s just best to confirm.
Not to mention, you can’t figure out if you’re on point with your observations unless you confirm with a meter. But, it’s helpful to first feel symptoms, take a second to describe how you feel to yourself, and then check to see if you’re close.
Over the years, I have become pretty good at guessing my blood sugar within 10 points. But sometimes I’m way off and so obviously, it’s still necessary to not solely rely on feeling.
This is what I’m teaching her. I am enjoying the fact that she hasn’t had a low that makes her feel awful, yet, but it’s only a matter of time before she does and when that happens, I want her to remember what it feels like so she can recognize it the next time around.

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