Tracking my Son's Diabetes

So I’m Vivienne Ming and normally when I talk I talk about work that I do as Chief Scientist of a company called Gild. I talk of work that I do as a founder of an education technology company modelling student’s cognition. I talk about work as a theoretical neuroscientist at UC Berkeley at a place called the Redwood Center for Theoretical Neuroscience. It’s all cool I like to tal about that stuff.

Today I’m going to talk about something which I almost never talk about, which means all the more to me. so please forgive me if it’s a tiny bit rough because this is the first time I’ve ever give a presentation and we’re going to go quickly.

But what I talk about is my son Felix. Felix is an incredible kid, needless to say that I love him, and I think a lot of parents feel that way about their kids. He is so full of life and so amazing, and two years ago he was diagnosed with Type I diabetes. It was not a happy Thanksgiving.

None of the less he is also fortunate because he has two parents, all two of them are scientists. And we thought all right we’re going to go crazy on this. We recorded everything. We built these spreadsheets. We recorded everything he ate, every moment of the day, how his activities went up and down in the day, and we were so proud. The month we got out of the hospital, we went into the hospital with a checkup with his doctor and we brought this spreadsheet into her, and I like her. We just saw her yesterday. Not knocking my doctor, but my goodness, they were not happy. I mean the big unhappy frown on the face, particularly the nurse. This was not what they wanted. They didn’t want and what were we supposed to do with this.

So we were flummoxed. We feel like parents and adult sufferers get told this story. It’s like Jack Nicholson, you know forget about the parents it’s diabetes town. There’s nothing you can understand and nothing you can do.

And the chronology, well I hope I don’t come across as too arrogant but if you think diabetes is complicated, try the brain.

So we though all right, we’re going to build our own model. I’m not going to talk about the specifics of that model. Here’s a sample. This is literally from the start day one. This was a meal from Thanksgiving. Right up top can you see the mash potatoes and turkey gravy? That was leftover because we spent Thanksgiving in the hospital. And we have the angry doctor here and believe me this is happy doctor compared to ours.

They gave us this sheet of paper. It had three spaces for five days. Write a blood glucose level you know breakfast, lunch, dinner for five days. And then they squint at it, “All right here’s our treatment plan.” Are you kidding me? We couldn’t take it.

So maybe I went a little overboard. This is just a little sample of it and I’m not going to talk about the specifics of the model, more than happy to answer your questions afterwards. It’s a heretical multiscale vision model. We estimate the parameters of his insulin pump, at the same time we estimate ultimate dosing for insulin doses and just a quick look there, and this is totally a model, but on your left you can see the effect of the model versus a regular dosing regimen in terms of blood glucose level.

So what do we get for doing this and how does this work?

Well, it works because we collect a lot of data; all the things he eats, all these blood glucose levels. We talked and of course the benefit is having two scientists for parents, we just bullied this doctor to giving us a prescription for a continuous glucose monitor, nowadays it’s a Dexcom7. He’s got an Omni pod on him. He’s wired up. He’s got a Fitbit and actually have a Basis band. Particularly interesting there, we wanted him to actually, early on I don’t know if you remember, they were claiming this galvanic skin response now they just say it’s a perspiration monitor. But even that perspiration monitor, combined with the heartrate and the Fitbit and behavioral from school allowed us to pick up something really interesting.

He was originally diagnosed in preschool, but once he started first grade, Felix was showing this really interesting behavior. And this figure here is the day, the days of the week, and then throughout the course of the day and average over a couple of months.

This was early on when he started school and you’ll see something really interesting here which is if you look at breakfast, you see highs following breakfast. You know you eat a meal all of this goes up a little bit after a meal, and certainly if you know about Type I diabetes you understand of course you get highs. But what’s interesting is if you look at Sunday and Saturday and we’re eating breakfast, the same breakfast on Sunday and Saturday, what was going on there.

So just one of all the elements that we worked on with Felix, and can we answer this one question? And my goodness I wish I had that data from 18 months ago when we first started this with him, but what we did was we looked at the pseudo-galvanic skin response and the heartrate monitor. We correlated that against the reports we were getting from the teachers at school, and basically what we were able to find is that Felix was having anxiety spikes; he was starting first grade at a public school, you know he’s coming from a Montessori preschool , and actually this was kindergarten what you’re seeing right here.

He kicked the day off with no increase in activity, and we were looking at the Fitbit and looking at the Basis band and no increase in activity, but big increases in heartrate, big increases in the galvanic skin response, and a big increase in blood sugar levels, so if you think about and know about to trace this path the increase of anxiety leads to the increase of cortical steroids, cortical steroids are known contributing factors to increasing blood glucose levels.

Well that’s actionable, that’s actionable directly because we actually talked to the teachers at school and say listen, our son is essentially freaking out when he comes to the school and this isn’t good and this isn’t healthy. Surely he’s not the only one there feeling this way, but we happen to have all of these measures to show it to you. But at the same time, we’re actually able to intervene instrumentally in terms of his treatment and apply this model. So differentially on school day, not holidays, not weekends we adapt the model to picking up on this.

And just a quick look at and this is a terrible figure in certain ways but it makes the point. Here is the same data from before we started applying the model, before we picked up on this discovery, so it’s an average again by day and not an average of all days. And then here’s the result of applying the model. It turns out when you work it out he spends about a little bit less than half as much time in what we would call his high blood glucose days.

So of course as a parent I am terrified. I’m the kind of mom that would go in and I’d poke my kids in the middle of the night you know and you’re still breathing right? I’m awful. I know I shouldn’t do but I can’t help myself.

Now I’m like going in testing blood sugars and do I trust this monitor. But more functionally in school when he’s high it’s like ADD. It’s like autism and he’s just not there. He’s just not learning. The story of his life has been fundamentally disrupted.

And when he’s low, you know he’s five, he’s six now he’s emotional and we can keep him in range and that kid he could have been is the kid he’s going to be. Just functionally the education experience will be so much better.

And we’re able to achieve that with this care, and I know I don’t have a ton of time. There’s so much more I want to say, and I’m more than happy for the rest of the day to answer questions of what we do with Felix and all the details of the data we collect in how it gets integrated. And the fundamentals of the model that we use, but ultimately it wouldn’t be possible if we didn’t one, ignore the professionals that said don’t bother. Two, collect all of this data. And then three, you know in our particular case had the skills necessary to turn it into something meaningful.

But I think it’s just an illustration of something all of can achieve with the tools and the belief that there is a real change that we can make. And I have met parents at diabetes retreats that just feel like I can’t deal with this, this is out of my control and they’re on the point system if you’re familiar with it, and it’s really rounding all of the edges here to make it easy for parents to feel intimidated.

But we don’t have to go about in the world that way, and I think everyone in this audience recognizes that. but I think people in this audience applying this sort of thing with passion recognize this. And if you can take one other child beyond Felix, we have doubled the happiness in the world and you can make it times a hundred and times a thousand and maybe someday we’ll have a chance with this work.

So thank you very much.