Six months as a full time pancreas
maori.geek.nz
maori.geek.nz
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.
I hope you filed suit. That level of negligence is going to get the next kid killed.
Ignoring liability, that’s a very heavy responsibility.
In an imperfect world, and where everyone fires off a lawsuit, I don’t see the upside. Sooner or later mistakes are made. Humans are imperfect.
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.
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).
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.
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
Not really a useful comment, because I lack anything useful to say. ¯\_(ツ)_/¯
Cheers :)
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.
https://androidaps.readthedocs.io/en/latest/
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.
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.
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.
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.
Were I in that field as an engineer, I'd be all in favor of being very conservative - and it has nothing to do with liability.
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.
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...
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.
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.
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.
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).
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.
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.
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!)
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.
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.
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:
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.”
Solid A1C! Solid care! Kudos!
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.
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.
For teenage and adult T1’s, simply being low-carb is often enough to greatly improve glucose control.
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.
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.
Forgive me if any offence is taken. Sometimes more data is not better and only leads to increased anxiety and over reactions.
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.
To me it didn't read as panic. Telling someone to chill out is almost never a good idea.
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.
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.
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.