Sheldon Steed

We walk a lot

I don't particularly like exercise. But we live in a place where we walk a lot and it makes a huge difference to our overall health. Sounds a bit trite, but walking stairs or walking for 15 minutes to King's Cross rather than take the bus has a huge impact on how much exercise we actually get.

The kid has a pedal bike and he's usually on that wherever we go. He has a lower carb diet than currently recommended (he still needs carbs though) which really helps us manage his blood sugars. Fewer carbs means less insulin, which lowers the swings from highs to lows. Which means fewer surprise hypos. At least in our experience.

SCHOOL STARTS. BIG CHANGES.

Our kid started reception last week. It’s awesome. He loves it. On top of that my friends and I are building a cool tracking system to manage his blood sugars better. We have a sync system that allows us to see his results in real time throughout the day.

It’s incredibly empowering. I don’t have to sit worrying all day that things might not be going as well as they could. And the teachers don’t have to single the kid out as an extra burden on their workload.

But now new challenges are developing as he gets older. Hanging out with other kids more often means we have to figure out how to keep on top of it without making it a big deal. This morning I overdid his insulin and forgot to check within his active time. He had a low right before some friends came over so he was knackered and we had to bring him back without making him feel out of place. Which was near impossible.

My friend is a rodeo fan. I think it's partly tongue-in-cheek, but also he really likes it. #diabetesmanagement is like riding a bull. London weather has been hot this week. And rather than our kid's blood sugars going down like usual, they have hovered high. No idea why.

When I ask people about their blood control, usually even the best of them say, "It's been terrible lately." They seem apologetic. But blood sugar management is like riding a bull, so you're bound to get thrown sometimes.

My day job is building tools to take the guilt out of managing diabetes. Give people the tools to have a better handle on things and don't worry about when control goes sideways.

Of course, worry when things go sideways, but only worry about implementing strategies to get back on track. It's not a reflection of the person if their control is difficult. The whole thing is difficult.

Apparently Tuf Cooper didn't advance to the Calgary Stampede finals. But I'm told he's an amazing cowboy.

We keep track of our kid’s type 1. Blood sugar readings, carb intake and his insulin. It’s not because we’re obsessive (though we probably are).

It’s because it gives us power.

We better understand his blood patterns and how they relate to the food he eats. And we know better what’s going to happen when he eats a piece of pizza.

But we don’t use a pen and paper: that’s more work than its worth. We want tracking to be easy. We want to see results graphed out so we can know what to do next.

We want to see when we have hit targets and we want to see how well we have brought him back into range when things go sideways.

Yesterday his cannula stopped working after eating a croissant, so everything went hairy. But we got to see the results of bringing him back into range. Sometimes it keeps you up at night. Sometimes you get to feel ok. The kid seemed happy enough, so we slept well last night.

I want to normalise diabetes for my kid. For us that means, ‘Yeah, he has type 1 - it’s a thorn in the side, and always there - but he has other stuff in his life as well.’ Like Superheroes. And riding his bike. Being 4.

Still don’t know what ‘normalising’ will look like for him though. Of course, ultimately he will be the one to decide, but I’m a fool to think I won’t have an impact on what he thinks ‘normal’ is.

Some people wear diabetes as badge of honour. Perhaps as a response to the shame that they and others feel or have felt about it at some point. That’s good when it helps them manage their health. Others position T1D in their lives as the nuisance ticking beneath the surface, but rearing its head on occasion when management difficulties arise.

Whatever helps my kid live through managing blood sugars every and all day, but be able to get on with the rest of life.

Rather than “HE HAS DIABETES!" we’re after more, “yeah, he has diabetes, so he’s eating this sandwich before he goes surfing."

I had a great chat with @SouthwellChris this week. He's a pro snowboarder and, now, adventurer doing 7 endurance events on 7 continents. Inspiring story. Wants to show what people with diabetes can do. Check him out here: 7c7a.co.uk.

Wasn't an interview. Just wanted to find out more about what he's up to. Top guy. Big lesson for me from our conversation:

Hypos happen.

He seems like he's the pinnacle of self-management. But hypos happen to everyone. He's pretty matter of fact about that. Don't beat yourself over it.

We forgot to pick up test strips on Friday before the pharmacy closed, which meant by Sunday evening we were nearly out. So I found a spare glucometer and strips that were a different brand.

Tested with our regular tester and he was at 21mmols. "What the what?" So then we tested with the different glucometer and it read 15.

Either way he was high and we needed to implement our strategies for getting back into range.

The numbers on the glucometer are not accurate for us to beat ourselves up over the results. Of course we use those results to guide us, but it's not helpful to feel like we're bad people if the numbers go off. 

The yellow line shows where he spiked. The good thing was we got him back into range right away without going #hypo.

The quickest way to best practices in self-management of diabetes is connecting with others and finding out what they do.

Also, never change your diabetes management regime without consulting your healthcare person. We're not doctors around here.

Took our kid for a checkup this week. Great result for us (A1c at 6.6), but then today he had a MASSIVE high. Why am I telling you? So you know it's not always better for everyone else. And I'm not smug about his A1c either. Managing diabetes is hard work and not always in the fun way.

When he goes high, we try to get him back in range as quick as possible without going low. Here's what happened.

At 11 am he tested at 16.6 right before we went out. We weren't worried because for his size and weight the insulin takes about 1h15 or 1h30 to work and he had only been bolused 50 minutes before. (He's 3 and weighs about 15kg.)

We bought him an Ironman suit for his birthday and were enjoying how excited he was. Around 12.30 we realised we had better get some lunch and test him to make sure he didn't go low from the earlier insulin.

We tested him and the glucometer read "Hi". Test again and it was "Hi". That means his blood sugars were over 30.

So we cancelled our plans to buy a suitcase (big day, I know). We took him home, changed the cannula by 1.15 and gave 1u bolus. Tested again at 2.10 and he was at 24.4. We had forgotten to put on a temp basal, so we added .7 over the next hour.

Then at 3pm he was 10.3. Result! But now we had to make sure he didn't keep going low. SO 3.15 we gave a bag of hoolahoops and a sweet for a total of 20g carb. (Crap food that J's mum would not be pleased about.)

Test at 3.25 just to check and he's at 6.1. Result again because he's in the zone and we just gave a bunch of carb to catch the drop. Then 4.10 he's at 8.7 and I bolus .2 to make sure he doesn't go too high again for the carb I gave him.

His results were stable the rest of the day.

What was key? We test often, know roughly how long it takes for the insulin to work/stop working. And we use meals and food at appropriate times to catch the blood sugars on the way down.

Don't know what I'm talking about? Send me a message. Or submit a post.

The quickest way to best practices in self-management of diabetes is connecting with others and finding out what they do.

Last week we wrote about what we do when the weather gets hot and blood sugars start to drop. We will head to the park and spend all afternoon worrying about #hypos. Afterward his blood sugar heads skyward since we have been easing off insulin throughout the afternoon.  The problem is here. The first strategy for dealing with the problem is here.

The second strategy is for us to give him complex carbs, which is basically food like bagels or pizza where the carb isn't released all at the same time. So if we bolus for it, our kid's blood sugars will go down, but then climb again after a couple hours.

So we head to the park at 1.30. At 11.30 he eats a bagel (45g carb) and I bolus for it. Then at 1pm I test again and give a bit of carb like a cereal bar worth about 15g of carb and bolus for that.

The carbs from the bagel kick in to keep him from going hypo through the afternoon. I will test every 75 to 90 minutes depending on how confident I feel about everything.

I haven't tested this strategy many times so I will be keeping track of how well it works in the longer run.

Contributor: Tim Harries

I've realised that irregular amounts of exercise mean irregular needs for basal insulin.

When I went away for a restful weekend with my wife recently, it took me three nights of high blood sugars and three gradual increases in my basal dose to get re-balanced. In the process, I lost quite a few hours' sleep (waking up with sugars of 28, 22 and 15) and felt my energy drain away. Restful, yes, but not exactly rejuvenating!

So I've started keeping track of my exercise rhythm. Last night, I recollected that I had cycled 10 miles on each of the previous two days. Hence, I injected 7 units. Had I not exercised much that day, I would have injected 8 and if I hadn't exercise much for the previous two days, I would have given myself 9.

Is this going to work? Not sure yet. I know that exercise has a cumulative effect on blood sugars, but I'm not sure how easy it is to work that out. For example, on Saturday I played tennis for 2.5 hours. Is that still having an effect?

We went back to the skatepark again this weekend and came up with two strategies for avoiding exercise hypos in our 3 year old. Here's the first strategy. 

Last week I wrote about how our guy will go low when he's running around and then skyrocket after.

He will trend low for about three hours. If he's had a normal lunch just prior to heading out, we shut off the pump (or unplug it) for 2-3 hours and test every 90 minutes. It might sound obsessive to test that often when we're out and about - and it is - BUT if we're not testing we're just worrying anyway. We try to test quick so he doesn't get bothered.

If he's a bit low we give some grapes to keep things up in the 5s. Because he's had no insulin all afternoon, eventually his body goes, 'what?' and his blood sugars head to the sky.

That's when we plug him back in and give a bolus for all the basal insulin he missed. About 30-45 minutes after the big bolus we give him some carb (a bar or something worth about 15g carb) and bolus for that as well.

We think the delay gives a chance for the insulin to start working against the blood sugar climb, but it also helps avoid #hypo because it counters the downward trend. If he does trend low, we catch it because we test within 1 hour 45 minutes. And by then it's dinner time so more carb can catch any potential lows if we're over ambitious.

Here are the tools we use: delayed insulin dosage to avoid hypo, carb while he plays, extra insulin after and spaced between mealtimes.

This is what we do. We're not doctors, but you don't have to be a doctor to get type 1. Quickest way to best practices is through sharing experiences. But make sure you consult your healthcare provider if you make any changes to your regime.

We trend our kid's bgs, but in London if the weather gets warm, everything changes. We practically need to shut off the insulin pump to keep him from going low.

The whole time we're thinking about hypos and then late in the afternoon he skyrockets because he hasn't had constant insulin throughout the afternoon. Yesterday we were skateboarding and all the exercise and heat meant he dropped.

We caught it at 3.6, but then he went to 19 a couple hours later.

We're going to try to trend this if we get any long-term weather that is nice. Will probably try to shut off the pump for two hours and then give a bolus, but we need to watch how long he is fighting #hypo and then how long afterward he goes #hyper.

Quickest way to best practices is if people share anecdotes. This is what we're going through. We're not doctors, or giving medical advice, but we manage this day in and out.

Tim Harris contributor

@KarenBittrSweet #DBlogWeek Came across this blog today. I like her. #hypos are real, even for those who are paying attention.

Came across this everydayupsanddowns.co.uk on my Twitter feed. This guy is engaged with his diabetes. His last post shows blood sugar results before a half-marathon. He also has links to other blogs.

Also he donated proceeds to fund a charity training medical detection dogs, which can detect hypos and hypers in diabetics while they sleep. Pretty cool.

#T1D #T2D #diabetesmanagement  should rely on self-tracking. It's not about wanting tech to run your life. It's about using available tools to give you the best chance possible to improve your diabetes control.

Yes, full-disclosure, some friends of mine and I have been developing what we want to be the best tools for people to manage their diabetes. And that involves finding better ways for people to have context in their decision making about blood sugar results.

It is also about inspiring them to engage with their own blood sugars. That's the best way to improve results: empower and engage users.

What's this post about again? Oh yeah, Ethan Kaplan, as far as I know, has nothing to do with diabetes management. But he says insightful things about tech and the music industry.

Here @ethank talks about self-tracking - like Fitbit and Nike Fuelband - as a way to control your personal identity. Maybe a stretch here, but for my kid's purposes it's also about harnessing the physical aspect of his identity and impacting the outcomes: that is, impacting who he is.