I'm writing a book that includes a child with diabetes. I would really appreciate any help I could get to better understand diabetes and maybe have some questions answered

Hi @Skipper_of_Stones, we’re the parents of a 3-year-old boy. Here is what we do anticipating possible emergencies (we live in earthquake country). He has a bag with him at all times. It has his name in it: It also has pens and syringes along with a vial of insulin, which lowers blood sugar, and an emergency glucagon kit in case his blood sugar gets dangerously low to the point where he is unconscious and cannot intake sugar. It also has a blood sugar meter, a lancet and test strips, alcohol swabs, a bunch of glucose tabs and glucose gummies, jelly beans, a charger for his cell phone (which transmits his blood sugar data to us, the parents) and his Dexcom receiver. If we were going camping, we would add to his emergency supplies: a spare sensor to read his blood sugar every 5 minutes in case the one on his arm goes bad, a spare pump site and reservoir and skin tac and unisolve wipes (the pump site is for kids who use pumps), the latter two are to make things stick to the skin and to remove sticky things. In addition to this, we have laminated notecards with simple instructions that will keep him basically alive and out of DKA in the event someone else has to take care of him at daycare and he gets stranded. It shows basic insulin doses for food, basal insulin, and how to treat lows and treat an emergency hypoglycemic episode.

While it’s important to understand how blood sugar is affected by various foods, most diabetics nowadays are told they can eat whatever they want as long as they take the appropriate amount of insulin for it. This would be particularly true for a 5-year-old, because they’re growing you can’t really restrict what they eat to regulate blood sugar in the same way you can for a 50-year-old. If they’re camping, they’d be eating camping food. In a survival situation there are probably a lot of unfamiliar foods and foods where you can’t figure out insulin doses precisely.

Our precocious 3-year-old is pretty on top of things. But here’s where I diverge from some of the other commenters on what is possible for a 4- or 5-year old at this age. They *may be able to test their own blood sugar, though that’s not super likely…but would be extremely unlikely to be able to give themselves insulin injections, and they would NOT know how to count carbs or figure out the dose of insulin they need for specific food. They would be able to understand that when they’re low they need carbs (and would probably know the rough amount of sugar they need to treat a low – say 3 jelly beans or 1 glucose tab), but they wouldn’t be able to reliably self-treat as that would require them having the self-control not to gorge on an available supply of sweets. They might be able to feel that they’re low (which may make them feel shaky, sweaty, look pale and dazed and confused, but also very hungry. My son tends to trip a lot when he’s low, and if he’s really low, he gets super shaky and wants to eat everything in the house). But sometimes my son confuses the sensation of being low with being hungry, or with being high, as some of the symptoms overlap. In general, he would be able to articulate how he feels but would not necessarily be reliable indicator. So if you didn’t know his blood sugar and you had to rely on his word, you could maybe get in the ballpark some of the time but you’d be off a lot too.

Also, I have to say I’m a bit skeptical of the notion that responsible parents would send their 4-year-old off into the wilderness with only a minimally-trained uncle. So you’ll probably have to send a grizzly bear along to kill the parents off on the way or something like that – we don’t even leave our son in the care of trained caregivers who are more than 10-minute walk away :grinning:!

As for things that could affect BG in a survival setting. Well, simple infections like colds or ear infections can raise blood sugar, make people insulin-resistant and lead to a condition called DKA, and high blood sugar can delay wound healing and make it hard to fight systemic infections, so if he sustained any kind of wound or cut that would be very tricky to handle. Then, exertion and altitude can lower blood sugar because both require more aerobic respiration and may increase insulin sensitivity – yet at the same time intense exercise can cause DKA even at low or normal blood sugar because the muscles can take in sugar when exerting themselves, but other organs, like the kidneys, can’t, leading to a situation where certain organs are starved for insulin/sugar while overall blood sugar is low. Stress hormones can spike blood sugar, as can growth hormones. Snake bites or venom can trigger kidney failure much more quickly in someone who is diabetic. Starvation could trigger DKA, dehydration could trigger DKA. Vomiting can be really dangerous in that setting because it means you take insulin for food and then can’t get your blood sugar up. And without means of monitoring, its easy to imagine a person going into a hypoglycemic coma overnight. Lots of scary situations to imagine…

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@TiaG

Wow, so much helpful information. Thank you for that.

Also, to ease your skepticism, the child’s parents both died in a tragic event. This is what leads his uncle to come retrieve him and his brother (the two brothers will be alone at their house for two days). His uncle will have 3-7 days in the house to read up on and gather literature to help treat his nephew and then they will have to take to the woods for a few weeks. Fortunately for the child, much of the traveling will be done on bike and he, along with his 6 y/o brother will be towed on a bike trailer made for kids.

It’s funny you mention snake bite. This character will actually receive a snake bite on the leg toward the very end of the trip. The dangers with a snake bite (relative to a non-diabetic) that you mentioned, would they be true of a non-poisonous bite?

This particular character (the 4/5 year old) isn’t a great communicator. He doesn’t talk much.

oh man, this kid is in trouble! Uncle better be sharp and quick on his feet!

He is. He’s the protagonist :wink:

So one hole I can see in the story right away: If the parents died and the kids are alone for 2 days, the child with diabetes is already going to be VERY sick and well on his way to DKA UNLESS his older brother is really smart and knows the basics of taking care of him AND little brother e is on an insulin pump that is auto-delivering his basal insulin. The general rule of thumb is that if you have no insulin injected into your body and you’re Type 1, within 3 hours you can start to develop ketones (the chemicals that are associatd with DKA), and you can be in DKA within several more hours.
So you need to have some idea of why this kid is alive and in decent working condition when uncle arrives.

I think this is only an issue with venomous snake bites, which make capillaries leaky, etc. A regular snake bite could spike blood sugar levels due to pain and stress but would probably not lead to kidney failure.

Orrr, the kid isn’t in good shape when the uncle arrives, and the uncle has to figure things out…just saying

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Good point. If the boy uses a pump, what would be the largest obstacles he and his brother would have in keeping him in good health over the two day span?

Also, you mentioned laminated note cards earlier. I think that’s something that could be really helpful here. Could you give any examples of what would be on the note cards?

@Chris
That is another option to consider.

Well, over the course of two days, if his pump is auto-delivering his basal, he’d have to still get extra insulin for his food. And his older brother probably doesn’t know how to give it on the pump … and probably doesn’t know what foods he could eat while getting away with using less insulin for prolonged periods of time. So he’d probably have either really high blood sugar from eating food without enough insulin (though probably not yet in DKA), or he’d be starving because he wasn’t eating anything, in which case he might be dangerously low and maybe his brother is just feeding him his low snacks occasionally to keep him out of a coma.

The notecard would give basic instructions like:
The child’s target range (say, 70 mg/DL to 180 mg/DL)
The dose and timing of his long-acting insulin shots
How much insulin he takes for carbs: for example, he takes 1 unit of insulin for every 20 grams of carbs he eats.
How to correct blood sugar above his target range (1 unit for 200mg/DL as an example).
How to treat a low. (i.e. test Blood sugar, give dose of sugar, wait 20 minutes, retest and then repeat if not above his low threshold)
How to administer emergency glucagon according to the instructions in the event the child has low blood sugar and is unconscious and unresponsive and can’t swallow sugar (depress the plunger and fill the vial with the fluid in the syringe, swish to mix, then draw up the glucagon liquid up to the smaller line). Inject all the fluid in the syringe in the thigh, then call paramedics.
If he wears a pump it would have step-by-step instructions for how to deliver basic boluses (big doses of insulin for meals).
It would also say to call the paramedics if he’s unconscious or not reviving, or if he’s vomiting or showing signs of DKA. It would have a list of what the signs and symptoms are of low and high blood sugar.

it probably wouldn’t give basic instructions on changing a pump site , which has to be done every 3 days though… we assume people would wind up defaulting to a syringe in an emergency because training to change a pump site would be tricky.

impressive!!

@TiaG

Thank you for all the great information and help you’ve given.

I’m really learning to appreciate what someone with T1D and/or their parents go through just to maintain a level of health that the rest of us take for granted.

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Just wanted to mention, there is a big difference between being in good management practice, things like regular BG testing and proper diet and insulin and having your CGM testing equipment. And being in survival mode.

I was stranded in a snow storm in the mountains about 33 years ago. I had plenty of food but was running low on insulin and was not sure how long it would take before I could get more insulin. So I cut back on what I ate. It was just the bare minimum to stay alive and make my insulin last.

The survival aspect somewhat depends on whether it is simply a matter of traveling and having access to normal things like food and water and all of that, or whether you are out on your own in the wilderness with minimal supplies.

If I could have only 4 things in the woods, it would be 1) a vial of insulin, 2) a syringe, 3) a knife, and 4) a flint.

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How about a pump in “auto/loop” mode (or whatever - we don’t have that yet - lol) so the pump keeps the kid healthy for the first 3 days while the 2 kids are alone then the insulin runs out and on the 4th day the kid starts not feeling good with the pump beeping and the older child not knowing how to remedy the situation then the Uncle arrives in the nick of time and and and … lol