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.
Well written, great to see this getting attention.<p>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.<p>1.6 is <i>not</i> 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.<p>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 <i>also</i> break their arm, someone with Type 1 can in fact still get Type 2, or gestational diabetes (if they're capable of childbearing).
This is a follow up post from “The Unreasonable Math of Type 1 Diabetes” (<a href="https://maori.geek.nz/the-unreasonable-math-of-type-1-diabetes-8c96bdf5b7fb" rel="nofollow">https://maori.geek.nz/the-unreasonable-math-of-type-1-diabet...</a>).
It is more about the long term complications of T1D and the way we have adapted our strategies to minimize them.
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.<p><a href="https://loopkit.github.io/loopdocs/" rel="nofollow">https://loopkit.github.io/loopdocs/</a>
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.
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.<p>From my T1D partner of many, many years:<p>“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.”<p>Solid A1C! Solid care! Kudos!
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.<p>What's the current thinking on a low carb diet for T1 infants?<p>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.<p>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.<p>I realise that for a growing child, the nutritional concerns would probably be rather different though.
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.<p>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.
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 <a href="https://replica.health/" rel="nofollow">https://replica.health/</a>. 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.<p>Forgive me if any offence is taken. Sometimes more data is not better and only leads to increased anxiety and over reactions.