Its almost uncanny the similarity I have to Graham. NZ, programmer, daughter T1 diagnosis about 2 years ago. A CGM and insulin pump were absolute game changers for us. We went with the Dexcom CGM (not funded) and t:slim pump (funded). The control IQ software in the pump is great and we have got her time in range to > 95%. One scary story to share though, as we started trusting her school/teacher aids to administer/supervise bolus and corrections (before she was on a pump) it only takes one small mistake to potentially kill her. She was had high BGL and needed a correction to take her back down to 7 mmol. There is a bit of math to do, but they made a mistake and corrected her to 0 mmol. Luckily because we had the Dexcom we were alerted. We tried contacting the school when we saw her dropping, but got no answer. We rushed to the school to find he delirious lying on the field alone. It could have been worse but we are grateful for the technology that we have that basically saved her. Needless to say, we don't trust anyone else with those calculations any more.
What? Watching the kids is the most important part of the job. I can understand a mistake with dosing (we can't expect the teachers/aids to be skilled nurses too). I can understand the phone going unanswered sometimes. But a kid laying delirious in the field?? Making sure the kids are all still alive is like the bare minimum task for guardians, regardless of whether they have diabetes or not.
Hey,
We do have a lot in common. We have not trusted anyone with Sam’s management yet. That would be my nightmare situation though, and more reason to put technology with safeguards into the loop.
It's been 8 years since our now 10 year old son was diagnosed with T1D. Pre-Covid he was in school (in the USA.) Only one potentially serious incident when the staff accidentally gave him 2X the insulin he was supposed to receive for lunch (this was when he was on a lousy Medtronic pump/CGM combo.) Fortunately the staff realized their mistake and called us immediately. We live a few minutes from the school and so a crisis was averted with a stack of glucose tabs before his blood sugar dropped dangerously low.
We've homeschooled him since Covid (he has no desire to go back and socializes with other kids outside of school.) He's now on a Dexcom / Tandem pump + iPhone mini (for transmitting Dexcom blood sugar levels). We have three SugarPixels (https://customtypeone.com/products/sugarpixel) - one for our bedroom, one in the kitchen and one in my office. A game-changer for us was the free app called SugarMate. It integrates with Dexcom and will call you with an automated message when blood sugar level goes below a specified threshold. This helped us sleep through the night knowing if his blood glucose level went dangerously low we would be woken up by the automated phone call.
Really, really sorry about that. We have similar but different issues with one of our children. I understand the constant stress that something could happen. I wish you the best of luck.
Well written, great to see this getting attention.
My daughter is 4, and was diagnosed at 2. Her blood sugar today has already been both 16 mmol/L (288 mg/dL) and 1.6 mmol/L (28.8 mg/dL). It's a constant struggle.
1.6 is not a normal occurrence. She was 6.7 and bolused 15 minutes before lunch (as per usual) and for whatever reason today she dropped incredibly fast. Treated before she reached that low, but metabolism can only work so fast. Here in lies the challenge of being someone else's pancreas.
Just a note to anyone reading this who doesn't know much about Type 1 diabetes - and in all honestly, why would you? However, if someone says they or their child has Type 1, please don't start talking about your experience with Type 2 or gestational diabetes. Don't get me wrong, they're serious medical illnesses in their own right. However, it's sort of like someone saying they have debilitating rheumatoid arthritis and responding with how you broke your arm this one time. A broken arm can for sure cause life-long problems, but they're not the same thing. And just as someone with rheumatoid arthritis can also break their arm, someone with Type 1 can in fact still get Type 2, or gestational diabetes (if they're capable of childbearing).
1.6 is scary. We have seen 2.3 and his hands were shaking and he was really sluggish. Some days are rollercoasters and some days we keep him perfect.
Today our average was really low because for some reason over the last two days his insulin requirements have dropped. Some days we have to give him double the insulin just to get him below 12.
The chaos is real
Do note that all blood glucose meters get pretty inaccurate when it goes below about 4 mmol/l, depends a bit on the exact test used and varies wildly with environmental conditions. Consider it "low" from that point onward. The meter manufacturers will tell you it's always within the ISO bounds but that is under controlled conditions with new test strips accuracy goes out the window the lower you get and the less favorable the environment is.
From my personal experience with bolus is that it can vary wildly with injection site especially for slower working insulin, I used to get massive hypoglycemia from time to time with actrapid simply to injection site changes.
The times I've had crazy fast drops from a bolus have mostly been when the needle went too deep and made it act more like intramuscular than subcutaneous.
In the early days(I was diagnosed in my teens so always self managed) I used more injection sites, but have found that the only ones that work predictably for me are the abdomen and the sides of my butt. Something about the consistency of the fat there. Trying shoulders, arms or further round or down the thighs I would get big variations in speed from one injection to the next, even with 4mm needles.
This is a follow up post from “The Unreasonable Math of Type 1 Diabetes” (https://maori.geek.nz/the-unreasonable-math-of-type-1-diabet...).
It is more about the long term complications of T1D and the way we have adapted our strategies to minimize them.
For other people passing through the comments, that post was on HN several months ago https://news.ycombinator.com/item?id=30376777 with 673 points and 304 comments. There is a lot of interesting material in there to read too.
Perhaps add “article author” or something similar, as it is not obvious on some of your comments. Thank you for your write up about such a personal topic.
Except type one diabetes is only partially affected by genetics. A woman with type one diabetes has less than a 4% chance of passing it to her child.
The biggest risk right now to our genetic success is overwhelmingly the fact that the people most likely to reproduce are the ones with the least amount of education.
> The biggest risk right now to our genetic success is overwhelmingly the fact that the people most likely to reproduce are the ones with the least amount of education.
Idiocracy wasn't a dystopia, it is a documentary...
Sarcasm aside: A low amount of education is not really related to genetics (some forms of inheritable mental health issues aside). There are, however, extremely strong correlations with poverty:
- poor families tend to live in areas with underfunded and thus lower-quality public schools, whereas rich people have better schools and can afford after-school private education
- poor families tend to have issues with food security, which was brutally shown by covid as schools had to stay open simply so that the children could have at least one warm, somewhat healthy meal a day
- poor families often tend to send their children off to work as soon as they can and are legally allowed to, simply to help make ends meet. That leaves them less time for homework and learning (leading to lower grades), and not being able to pursue higher education at all because having a job to survive is more important, which in turn locks them out of higher-paying careers and sets them up for being poor for life
> A low amount of education is not really related to genetics
Intelligence in adulthood is overwhelmingly heritable. Environmental and upbringing effects are small. Twin studies, unrelated sibling studies, etc, demonstrate very large effects.
(Oddly enough, intelligence in childhood does seem to be very influenced by environment, but by adulthood your genetic destiny takes hold).
Intelligence is also the biggest single predictor of your child's educational attainment-- even bigger than SES.
Of course, it's not really clear what one can do with this information that is both ethical and useful.
A confound: severe neglect and abuse is known to permanently reduce intelligence, and this is much less represented in adoption studies because of parental screening and social worker follow-up.
I think we no longer aim at purely physical strength. In the old days person who was not able to work on the field, in the garden, have 10 kids, hunt, fight was useless. This is no longer the case, maybe those kids when they grow up will be scientists or artists, maybe they will make our lives much better.
That's kinda the feeling I got from reading the post.
Eugenics is a part of science deemed immoral and forever shunned because associated with the nazis, but maybe it would be good if we had made enough progress to avoid babies that come near death 4 times a day every day and require their two parents to be dedicated to their care 24/7.
I've had this argument before: If you argue eugenics then you should really look into your family history and be 100% sure no-one has any "defects" anywhere. Most people who argue it have either needed some form of intervention somewhere in their lives to fix a "defect" and in other cases one of their predecessors and would they be unwanted in the eugenics-fanatics eyes. (Reflection usually works quite well with when someone is reasoning for eugenics)
Eugenics doesn't necessarily mean kill the baby. It meant that in the past only because science wasn't advanced enough. Techniques to modify the human genome exist; we could potentially "fix" the bad genes without killing the child.
Well that's a pretty week argument. Yeah sure if we killed every baby to be that had a defect I probably wouldn't exist. But I wouldn't care, because I wouldn't exist.
Note I'm not saying to kill those unborn children, I'm saying that if this medical field had not been completely put to a stop following WW2, we wouldn't have to kill unborn children but we could do in utero interventions to prevent those conditions from developing.
"Kill the babies" is the current state of eugenics because it has been at a full stop for more than half of a century. That's my point.
I am not saying we should let diabetic babies die at birth. I am simply reflecting upon the fact that their genes would have been removed from circulation in the past; this is no longer the case.
If we disallow nature from taking its course, it will have consequences on "genetic quality". Following that train of thought and assuming we don't want to kill genetically malformed babies, an alternate route must be chosen. Better in-utero screening, CRISPR to fix the deformed genes, etc.
You realize that type 1 diabetes only manifests after birth, right? My wife was in her 20s when she was diagnosed; in-utero screening would've been useless.
Not the poster, but I assume they mean in utero genetic screening (an unfeasible idea, nor currently possible for diabetes or the majority of disorders)
I'm not saying to kill those unborn children, I'm saying that if this medical field had not been completely put to a stop following WW2, we wouldn't have to kill unborn children but we could do in utero interventions to prevent those conditions from developing.
How, though? It's not like we've had the ability to diagnose the majority of these diseases in utero until fairly recently, nor have we the means to intervene, even now. CRISPR as a tool has existed for just over a decade, and we're still very far from the ability to reliably modify fetuses, even in lab animals, and it's been only possible for, what, 5 years now? Lab research did not stop after WW2, and even then we've barely gotten to this point. The ability to sequence the whole genome and find mutations for the major disorders is still a far off goal. The majority of disorders are now known to be polygenic, affected by hundreds of different gene variants, with each population group seemly affected by different groups of genes. Nor have we settled on a definitive group of gene variants that can reliably be identified to be deterministic of any widely distributed disorder, outside a small handful like CF and DMD.
May I suggest you look at this project that combines the Dexcom with your pump along with software. It is not a simple turn it on and automatically everything is perfect, however it is by far the best option right now for type 1 diabetics if you are willing to put in the effort to set it all up - which from all the testing and finger sticks indicates you are.
It has a quite nice support for different devices already, and the installation and usage is a tiny bit easier due to Android having much nicer side-loading experience compared to iOS. The project Discord has lots of tech-minded diabetics discussing...
I've been using this software for multiple years now, and it has completely changed my life to the better.
Getting algorithms like loop that are available in New Zealand AND have a bunch of evidence for being safe with toddlers is difficult.
At the moment we are using CamAPS which has been used a lot in the UK with toddlers but as far as I know Sam is the only one on it in New Zealand
Amazing read, really well written - prior to reading, it seemed odd to me that a simple PID insulin or sugar pump armed with a glucose sensor could not mimic a pancreas. I didn't realize there were so many variables. It still seems from my engineering mindset that a PID device should be able to do this, but I'm starting to understand why it's not so simple now.
So, insulin pumps linked to continuous glucose monitors (CGMs) do exist. For example, "Tandem Control-IQ" or "Minimed Smart Guard". These are known generally as "Hybrid closed-loop" systems.
They work very well and generally offer positive outcomes for most people with Type 1 diabetes. They are called "hybrid" because they do not try to correct for carbs that you eat ("bolus"), rather they only try to adjust background insulin levels ("basal") and do some "mopping up" if you mis-dose for carbs you eat.
The main things holding them back are that:
- CGMs only measure glucose in interstitial fluid, which has a time-delay of 5-15 minutes from veinous blood glucose
- Injected insulin also takes roughly 5-15 minutes to start acting and peak action is after an hour.
That means your PID controller could have up to a 30 minute lag time to the system it's controlling. And let me tell you, blood glucose isn't a slow system. It can go from dangerously high to dangerously low in 30 minutes (or vice-versa).
The body has the advantage that its insulin is faster acting, it can sense blood glucose changes faster, and it can use other sensors (e.g. glucose receptors in the mouth can start insulin production before it ever hits the bloodstream).
"Artificial Pancreas" schemes usually use ultra-short-acting insulins which are even quicker acting than "regular human" insulin.
There is virtually no immediate danger from high BGL (but medium to long term for sure!). High BGL over long time in Type-2 diabetes means there is actually too much insulin production for your own good, leading to high insulin resistance, leading to a situation where the cells aren't getting enough glucose at all. But this state takes some time to develop. Low BGL is the other way around: immediate danger, long term it's easier to buffer or control. Keep in mind those are generalizations. Don't take this as medical advice. Don't think I'm saying there is no need to react to high BGL.
Just as a heads-up, people with type 1 often bristle at people using their experiences with type 2 to talk about type 1.
It’s incredibly common, but you should be aware (you actually might be!) that type 1 diabetes and type 2 diabetes are incredibly different diseases, having almost nothing to do with one another apart from that they’re related to blood glucose. Even insulin-dependent type 2 is a very different ballgame to type 1.
I’m definitely not implying a ranking here or devaluing your experience with a serious chronic illness.
Anyway, I’m thick skinned about this, so this isn’t really about me. I’m just trying to let you know that you could engender negative reactions by being unaware of this common “sore spot”.
EDIT: Sorry, I see you’ve addressed this in a different comment, so you’re aware. All good, I’ll leave this up as general advice to others.
> ultra-short-acting insulins which are even quicker acting than "regular human" insulin.
Whilst this is true chemically, it's the delivery mechanism that causes the delay. The chemical composition of insulins like Novorapid (which my daughter uses) are slightly faster than regular human insulin, but not nearly enough to account for the aforementioned (up to) 30 minute lag.
> The chemical composition of insulins like Novorapid (which my daughter uses) are slightly faster than regular human insulin
Huh, thanks, I was not aware that novorapid is faster than endogenous insulin (most graphs show it much slower, albeit when taken subcutaneous). I switched from Novorapid to Fiasp because of how long Novo took to act, funnily enough.
Also, moderate-fun fact: intramuscular injections, while a bit painful apparently, can release insulin much faster than subcutaneous. By much faster I mean Lantus/24hr insulin can make you hypo within an hour, as per what I read online on a particular post.
I very occasionally do this with Novorapid into my shoulder muscle (one needs a longer than usual needle for this) to drop a high blood glucose fast, for example after a failed infusion site at night.
It does feel weird, but it does work.
(This is not medical advice! This is dangerous! Ask your doctor!)
The PID mindset, maybe with a "bayesian" bend, is generally the right idea. You have to realize from the outset that you're not going to predict the results of your actions correctly, and you can't even tell afterwards what effect your particular actions had. Which is frightening. Internal medicine is a lot about "let's try this common dosage and see what happens". It gets worse with an organism still growing, which means the dosages and effects have a long-term trend at the least.
In my (non-human-medical) opinion, low blood sugar is on average better than high blood sugar, especially for patients who don't need to walk around unsupervised and operate heavy machinery (i.e. cats, dogs, small children). An adult Human body only has on the order of 3g of sugar circulating in its blood at any time. We can easily generate blood sugar from protein. It's much harder to eliminate high blood sugar. Even extreme overdoses of injected insulin often only result in a coma that the patients can often recover from on their own because they metabolize the insulin and generate the glucose. I'm not recommending that, of course!
Low blood sugar however, is an immediate problem, high blood sugar is a long-term problem. Getting the balance right is hard, especially for Type-1 Diabetes. In overweight Type-2 patients (like I was) usually the patient's liver is so good at generating glucose that it buffers a wider range of insulin dosages and you have more time finding the lowest sufficient dose. Insulin is bad for your health, it means too much glucose is deposited everywhere in your body, leading to all sorts of problems. But too much glucose in the blood is even worse, so...
Low BG is a nonstarter, because it immediately impairs you. You will crash your car. You will get confused and fight someone. You will pass out and not be able to reach glucose. That coma will cause brain damage.
And, if you have back to back hypo episodes, you will actually fry both your body's natural counterregulation (you deplete your glycogen store, which makes subsequent hypo events more severe) and your neurological response to hypo (you lose awareness that you are hypo). In the long term, after too many lows, you will lose your ability to recognize hypo entirely.
The brain/metabolism link runs deeep into the lizard brain. Real deep.
A non-diabetic with a 5.5% A1C is doing just fine. Someone with Type 1 with a 5.5% A1C is almost certainly critically endangering themselves and everyone on the road.
I agree with this but your numbers are off IMO. Diabetics who use closed loop systems diligently can achieve A1Cs nearer to 5 without becoming dangerously low all the time. It is hard, but new tech is making it easier. Also an A1C of 5.5 is at the very top of the acceptable range before being pre-diabetic (5.7). Lastly, your nervous system becomes accustomed to the blood glucose range that you are frequently in... there are studies about T2Ds with A1Cs of like 9 who get low blood sugar symptoms when their glucose is ~90mg/dl (normal). So A1C of 5.5 in T1D does not automatically imply dangerous hypos all the time, maybe A1C of 4.9 does though.
I did qualify "as long as you don't have to run around unsupervised and operate heavy machinery".
A BGL as low as to cause brain damage can only result from insulin overdose. And it must be quite a bit off, which means it is easier to avoid.
I also qualified everything with "on average". There are people, depending on habits and their particular circumstances/medical condition, who will have a harder time with the "rollercoaster" even compared to most type-1 diabetics. But that is what qualified diabetes assistents are supposed to help them with.
Also: I'm not a diabetic, but I studied veterinary medicine and know quite a bit about it also from a Human perspective.
Yes. Realistically, it is difficult to reach a bad end from a single, isolated hypo event.
But I have myself made the mistake of underestimating hypoglycemia. Growing up, I always had issues of under-dosing insulin, because my bodyweight was always increasing; it seemed like I could always get away with giving a bit more insulin. When I stopped growing in my early 20s, I kept on with the aggressive dosing (got frustrated with the high BG feeling!) and had a string of severe hypo incidents. I had no idea what was happening during these events, but not only that, my neurological response changed and I had hypoglycemic unawareness. And, since I was so aggressive with insulin, my counterregulation was gone, so doses and meals that used to end in 80mg/dL were now ending in 30 mg/dL. And because my neuro response changed after the first few, I would slip into complete unawareness even during a mild 55 or 60 mg/dL.
Unawareness feels like: gosh there is something going on but I don't know what. There's something that I urgently need right now (sugar), if only I could place it. I have to be somewhere (work) this morning, but I don't know where... Imagine having a vivid dream, in which something in the room (like a person talking next to you or a fan turning on or something) affects the dream. Now, while you're in the dream, try to figure out what and where that thing actually is. It can be very very difficult, because it's like, the bug is in the operating system.
You can easily die from this, and many people do, I think the common figure is 1 of 20 t1d end up dying this way. Overaggressive treatment after the honeymoon period ends, when growth stops, or when changing insulins (like moving from long-acting to the pump), or even just having a bad flu -- there are many ways to make this mistake. And it is not obvious at all when you are making this mistake.
It's somewhat common to hear from diabetics at my work that they slip into a diabetic coma regularly from this sort of thinking. It's rough, and definitely not better than a slightly high level.
What you describe (sugar + insulin pump) is called a "dual hormone" pump. No such device exists on the open market.
So that is yet another challenge. You can actuate in only one direction: pushing BG lower. PID does actually work for this, but it is outperformed by algorithms that can explicitly consider a patient model (model predictive control, or MPC). I believe closed-loop algorithms using both PID and MPC have been tested on in vivo, and both have been brought to market, although of course all vendors are very tight-lipped about what their algorithm looks like.
If you are working in the AP space, you are looking at algorithm performance after an unannounced meal (patient doesn't tell you that he's eaten: how much do you dose?). You will test your algorithm in a virtual patient simulator first. Then, if you are lucky enough to work with the research hospital at your institution, you can test your algorithm on real patients in vivo.
The low bar for bringing an AP to the FDA is a provable safety envelope: you will never ever dose too much insulin. Ever. Even if your RL agent learns badly, even if your patient put honey over the CGM site before putting it on. Not having a negative result in the simulator is not enough -- you need a provable bound on dose.
This is why the majority of RL algorithms do not work. And why the problem is so hard. You have this super complex system, with a ton of metabolic unknowns. Unknowns over short timescales, like food response, exercise, illness, stress, and so on. And over long timescales, like your diet changes over time, your body changes, etc. And you have huge variation between patients, with different genetics, diet, and astrological sign between people. Boy it would be nice to learn those unknowns with a computer, which is what every RL paper says about the AP. But: if you get it wrong once, it's all over, and further, if you really want to play, you have to prove that you will never get it wrong.
That's why every AP system out there now is very conservative, and why none of them are using exotic ML techniques. And why, with the standard classical toolkit, the problem is very difficult.
Although it's a bit old, this is a pretty good overview of where the field is:
Yeah from first glance you'd think so, but the feedback loop even with CGMs and insulin pumps is just so much longer and less sensitive than what the body normally does.
The CGM measures glucose in the interstitial fluid, and the pump injects insulin subcutaneously, while the pancreas secrets it directly into the blood stream.
Even with the improvements we've made with synthetic insulin it just doesn't work as fast or as well as what we produce internally.
This could be engineered around--mostly the limitations are liability.
If you, the patient, take a glucose sensor, an insulin pump and tie them together with an app, you don't get to sue somebody if something fails and you die.
If a company takes all three of those, packages them together, and sells them, then that company is now liable when one of the pieces fails and you wind up dead.
The sad part is that AI/ML would be incredibly useful for all this. People could take pictures of their meals, upload their sleep and exercise data, and weigh themselves, feed all that into a cloud algorithm that could determine how you are likely to react and dial your insulin plan into your pump while feeding the glucose readings back to the cloud.
Sadly, I suspect none of this is going to happen in the US due to the liability. Maybe China will pull this off.
I don't want to call your comment ignorant, but you are lacking a lot of the information necessary to see why it's not that easy.
For starters: Insulin is quite long acting. Maybe 4 hours for some injected "short-acting" types. Regular insulin (like the one from the pancreas) acts for maybe 6 hours. The ratio of how much insulin you need for a given weight of carbs doesn't stay constant. If you inject too much insulin, if you raise your carb intake, that leads to a higher ratio. Physical exercise modifies the ratio in a short-term fashion. Inflammation, like from a cold or other infection, can raise the ratio significantly. You could model the situation with a bunch of differential equations, and that's what a lot of scientific
Most of these variables can't even be estimated precisely enough because there is too little data for too much variation. ML/AI is good at using information in the dataset that is hard to describe or see for Humans. But it can't use information that just isn't in the input data, it's not magic. For Type-2 diabetes there are relatively simple rules that work remarkably well. Type-1 is a lot harder, partly because a lot of the "buffering" of the system dynamics is missing.
> The sad part is that AI/ML would be incredibly useful for all this. People could take pictures of their meals,
Pictures of food are nowhere near near enough data to determine the carb content of a food. My SO has T1, and there have been times where there's been no visible change, and I can only taste a vague change in the taste of some food item and the changes it caused to their blood glucose were wildly different that what it had done previously.
> Conversely, it sucks to know that software you wrote is responsible for having killed even one person - to say nothing of doing so at scale.
But, how many people did your software improve the lives of?
This is the real problem with stuff like T1D automatic insulin control loops. You will likely kill some number of people through failure modes. However, how much better will the lives of those people whom you didn't kill be? T1D results in a lot of complications over time that, if they could be controlled, would result in a significant increase in quality of life for the survivors.
I actually had this discussion with a doctor who invented an asthma monitor for his daughter. It would automatically inform him and the school nurse as well as transmit the severity of event so the father could dispatch an ambulance immediately if it was really bad. I assure you it worked as well as it possibly could. However, nobody would touch turning it into a product because, at some point, the monitor was going to miss an event (bad detection, cellular system transmission failure, something) and some child was going to die and the liability was going to be enormous.
And that asthma monitor is a much easier case to discuss as it's all upside--the monitor failing doesn't kill anybody. Without the monitor, some number of children will die anyway. With the monitor, some number of those children will be saved.
Having this discussion about T1D is much more difficult.
Out of curiosity, does the G6 require no calibration over 10 days? The way it’s worded is kinds of confusing because it kind of sounds that way.
From my T1D partner of many, many years:
“Great job! You’ve learned so much! All I would say is you’ve learned a lot, but as he ages, you’ll have to toss that out and learn that again, and again, and again.”
The one significant inconsistency with BGL between my daughter's regular meter vs. G6 CGM was when my daughter had paracetamol in her system. Dexcom do claim (in Australia at least) that the G6 is not affected by paracetamol - which is the opposite claim they made about the G5.
It was actually incredibly dangerous since it was 3am and the sensor was indicating she was very high and she was in fact slightly below target. Glad I thought it seemed sus and chose to do a finger prick, rather than telling her pump to deliver a bolus.
That one (scary) incident aside, we've had no other issues with the G6. In general I've found it to be much more reliable than even a regularly calibrated G5.
Perhaps the paracetamol incident was a coincidence and the paracetamol didn't play a part, but at least personally, I'm careful with medicines that have been known to interfere with CGMs - otherwise I tend to trust the G6.
First of all - my sympathies - it's hard enough managing this condition in yourself, and controlling it for someone too young to communicate must add a whole extra level of difficulty.
What's the current thinking on a low carb diet for T1 infants?
I'm T1 and during the periods when I've eaten very low carb I had amazing control - once I got my basal adjusted right I was using only tiny amounts of Humalog and my curve was the flattest it has ever been. It felt more like very occasional nudges to something that wanted to move straight, rather than constantly batting back and forth between 2 lines.
That said, I do eat moderate carb these days, because I find that I can still manage good enough control - after decades of practise and with close monitoring and a fair bit of work - and it's more convenient for eating with others, not to mention cheaper. I found my energy levels and concentration on low carb were good after a while, but the process of switching is tough, and it's not something you can easily dip in and out of. If my highest priority was easier and more reliable control with minimal treatment though I would absolutely choose low carb.
I realise that for a growing child, the nutritional concerns would probably be rather different though.
This is the comment I was going to write. I am not a parent and I have no experience with diabetes, but in my simple mind, if insulin's main role in the body is to control blood glucose, and the main trigger of blood glucose is carbohydrates... why not restrict carbohydrates? As with parent comment, it would just eliminate the blood glucose level rollercoaster that diabetics are otherwise expected to endure.
You probably would not be able to find a nutritionist that would recommend such a diet for a toddler though, given the current mainstream recommendations on meat, fat and low carbohydrate diets.
All food rises blood sugar and going low carb can have all sorts of weird effects in BGL. Keto/paleo/low carb is also not fun for a kid. If it takes a bit more work and he is safe he can eat some cake
You would definitely need to find the right pediatric endocrinologist with dietician support - preferably a dietician who has constructed and managed true ketogenic diets (for epilepsy, as the primary goal thereis to produce maximum ketone bodies as antiepileptics, not just cut carbs) for a good while. Those can be structured to provide all the necessary nutrients for growing children; infants would be hard even for someone with a lot of experience.
For teenage and adult T1’s, simply being low-carb is often enough to greatly improve glucose control.
Yeah. There is a balance between being a normal kid and going for 100% TIR everyday. No carb would help, but what would the trade off be. We let him have cake (without icing) and let him have banana and all sorts of carby food.
I understand adults that want that extra control for themselves, but I think it is another thing to make someone else do it. Like training for a marathon might be cool if you do it for yourself, but would be torture if someone else was making you do it.
This is an amazingly good read. The author pretty much describes in full all the requirements for a system / model that could help his son. (And which they have developed on an n=1 basis.) And it’s a complex system. Food, type of food, time, insuline (two types), body response times and curves / ratios, a measurement model. And then after admiring his technical writing I come away with a deep respect and empathy for what they are going through.
I only had a short period of injecting insulin and can empathize. I also had to do some of that Type-1 circus to cats and dogs in a clinical rotation.
If you ever get Type 2 diabetes, go on a fast for maybe two or three weeks once your insulin requirements have stabilized somewhat... I'd like to say ask a doctor, but they mostly think fasting is bad for you, just without any evidence to that effect. Of course, BGL testing is mandatory, and insulin dosages have to be adapted (reduced) quickly. But I got over insulin dependence twice using that method and I blame the second crisis on my failure to follow through.
I'd like to emphasize that I know Type-2 isn't very comparable to Type-1. I don't want to lessen or cheapen the struggle of Type-1 patients. I can only guess how hard that must be. I just wanted to pass on some knowledge because Type-2 is vastly more common.
A great write up. Fate would have it that my name is Sam and I am T1D as well! You should sign up for the mailing list of the application I am currently working on https://replica.health/. We are building a context aware search and recommendation system for T1D data. If CamAPS writes its data to apple health like dexcom does you guys might find our tools useful for exploring his data and for diabetes decision support.
I'm not telling you how to parent, in saying that waking a growing boy in the night and limiting food during the day, may be more harmful in the long term. Childhood sleep and nutrition is probably the most important thing to a boys health.
Forgive me if any offence is taken. Sometimes more data is not better and only leads to increased anxiety and over reactions.
That you feel the need to give advice despite being monumentally unqualified to do so should give you pause. Your chosen name "godmode2019" speaks for itself.
None of that comment is true except in the most general sense. You think you are giving advice, but the OP and other parents of Type-1 children have vastly more knowledge about diabetes, "childhood sleep and nutrition" and what it all means for their lives. Twice nightly blood sugar tests are unavoidable in many patients. No, you don't have to wake up the child necessarily. It's a simple finger prick at worst, so they might not even wake up or go right back to sleep. With modern sensors (which are less reliable) you only need to swipe the reader over the sensor.
My Grandad has type 1 diabetes he treats it with a strict routine of eating at the same time every day and injecting at the same time, and testing only if he feels low.
The article I read was a parent in panic, and my only advice could possibly be to try and chill out, which is almost impossible as its your son and you would want to do as much as you can. Which is why I felt empathy to the poster, I could feel his anxiety.
Your grandad was following advice given before the 1980s when typically using only long lasting insulin (which was all that was available) and strict routines were the only way to survive and be healthy with T1D.
You should read that DCCT citation I link in my post, it is a good read, about the impact of following the treatments of nearly 1,500 diabetics and their long term complications.
DCCT lead to a lower HbA1c being the goal as it is the largest predictor of long term issues.
There are many books like “think like a pancreas” and “sugar surfing” which explain and use the same methods I explain in the post. If you are interested.
Also, I would love to meet a person who can write a multi page blog post in a panic. Like “help my car is on fire: a history of car fires”
The post mentions twice a night. Not twice an hour. Your granddad is a much larger organism which means he has more stability and buffering than an infant. He also doesn't grow (which means carb intake and insulin requirements change even with every other variable being the same).
To me it didn't read as panic. Telling someone to chill out is almost never a good idea.
It's funny how the two most idiotic and repulsive replies in this thread (this one and the pro-eugenics one - ah HN, you keep surprising with new lows) both include "forgive me".
The way I put it is my son is a slice of bread away from hospital at any point during the day.
If he has bread and no insulin he will go dangerously high and if left untreated he will need to go to hospital.
If he has the insulin and doesn’t eat the bread he will go low have seizures then maybe death.
I am trying to understand what you are saying. Are you saying I should just give him a sandwich.
The rebound effect of coming back from a very low low is horrible, and potentially throws you off for several days.
So even if you don't come to the stage of say, death, the shuttering-in-a-cold-sweat-and-anxiety stage is way, way worse than being pricked in the finger in your sleep.
DCCT found reducing hyperglycemia to optimize for low HbA1c was 3x less risky than trying to reduce hypoglycemic episodes.
Hypos are bad, but long term hyper is worse. That’s why you get a HbA1c test when ever you get a physical.
It’s like you didn’t read all my citations :)
My overall point to the GP is that the sleep disruption of finger sticks is less bad then the sleep disruption that happens when you go too high OR too low.
Oh, 100% agree. I read your comment in the wrong context from an above comment. As a non-T1D person I can only guess how shit being low or high feels. So listening to T1D people describe how it feels is very useful for me as a T1D parent.
