When Kev’s daughter, Amy, was diagnosed with Type 1 diabetes aged 10, there were many issues the family faced – including Amy’s fear of needles. Keen to help, Kev started researching technology that he hoped could make Amy’s life easier.
Parent of a child with Type 1 diabetes
Kev’s journey with diabetes
- Daughter Amy diagnosed with Type 1 diabetes in December 2010
- From the outset, Kev was determined that diabetes wouldn’t stop Amy doing anything she wanted
- After joining the online diabetes community, Kev started researching the DIY closed looping systems that are also known as an artificial pancreas.
Amy had just turned 10 when she was diagnosed with Type 1 diabetes in December 2010. At that time, I knew there was a difference between Type 1 and Type 2, but that was about it. I didn’t really know anything about the condition.
When Amy was taken to the doctors because she was incredibly thirsty and needing the toilet a lot, they mentioned it might be diabetes. Almost as soon as the word had been mentioned, I realised that because of her age, it was very unlikely to be Type 2. From my limited knowledge, it seemed to be a disaster at the time.
Amy was scared of needles and I didn’t know that needles now are really quite small. I was picturing syringes with big, thick needles and how awful it would be for her. Once she was in hospital and I saw what size they really were, I realised it was much more manageable.
That was the first positive sign. When Amy needed her first injection, I was so proud when she opted to do it herself. She had only just turned 10. Although she disliked the injections, she almost took it in her stride.
I think it wasn’t a big learning curve to start with. We were taught the basics without being told so much it would freak us out. We weren’t carb counting at the time and there was no real structure to Amy’s diabetes management. Knowing the things that we know now, it’s hard to imagine how we coped in those early months. But we did. We coped quite well.
Emotionally, there was a lot less stress when we started using Nightscout and I could look at Amy’s glucose levels on my watch. The idea that I could get woken up by an alarm if she was too low or too high meant less stress.
Later, I got Amy ‘looping’, which is where her CGM data is read by a computer programme which then regulates the insulin her pump delivers. Her current system is a DIY solution called AndroidAPS.
As a dad, I just wanted to fix the situation. Now, the thing I really like is that when she’s ‘looping’, it’s ‘got her back’. We know she’s going to wake up on target or close. Her target is quite small – between 5.3 and 5.5mmol/mol. Pretty much every morning she’ll be within a mmol/mol of that.
Diet, nutrition and active living
One of Amy’s first questions in hospital was whether having diabetes meant she couldn’t go on a four-week holiday to India that we’d planned. I was just about to buy the flights when she was diagnosed. I’d said to my wife, ‘there’s no way we’re going to do this now.’
But when Amy asked if we’d have to cancel the trip I decided I couldn’t let her think that her condition had stopped her from doing something. So, we went ahead. We had originally planned to go into the mountains north of the Himalayas, but that would have been too far off the beaten track, with no big hospitals nearby. Instead, we did 2,000 mile train journey from Delhi to Mumbai. We even stayed in a remote village hut, with a local family. Those things set the scene for how well Amy has dealt with her diabetes.
In India, Amy had quite a lot of hypos at first because she didn’t like the food we were eating and she’d already injected for it. A few days that first week she had hypo after hypo. We ran out of hypo treatment, panicked and thought, ‘what next?’ Then we realised that all we really needed to treat a hypo was sugar. So we started having lots of tactical cups of tea to allow us to stock up on sugar cubes.
I joined the diabetes online community on Twitter and connected lots of other parents in the same situation as me, and lots of people with diabetes. Then I started learning about pumps and thought they sounded like a good idea. I started researching them, but Amy wasn’t interested initially. The thought of having a metal cannula inside her was off-putting. We didn’t realise there were ones you could get made of Teflon.
When someone on Twitter said that putting the cannula in for a pump would hurt no more than an injection, Amy eventually decided to go for one. She was 12 and we didn’t know if she’d be eligible.
We knew if we were going to get a pump it would make sense to get one that was looking to the future; one which would show CGM data on its screen. We self-funded Continuous Glucose Monitoring (CGM) and I discovered an online group called ‘CGM in the cloud’, which stemmed from the desire to get glucose values of your child in the cloud, meaning you could pick them up via your personal Nightscout website, on your PC, or your phone, or even getting the data on your smartwatch. It was something that I’d never dreamed about.
Amy’s CGM had alarms to alert us if she was going low, but they were in Amy’s bedroom. So if we wanted to check what her levels were after she was sleeping, we’d have to go into her room, fumble for the pump which would generally be in the bed, then try to find the display. All without waking her up. I thought this system would solve a number of issues, but it needed a Dexcom receiver, which cost more than we could afford.
Then, I read about a DIY receiver called the xDrip. It would read the Dexcom G4, send the data via an app to the cloud. Once it was in the cloud, I could get that information. I ordered all the components on 1st January 2015, bought a soldering iron off eBay, and within hours of them arriving, it was up and running.
The next day, I was in the kitchen, directly underneath Amy’s bedroom, when I heard an alarm go off. I switched on our tablet and saw her blood sugar was hovering at 3.8mmol/mol, so I waited a few minutes and watched her glucose naturally come back up to range. Seeing it on the screen for the first time was like magic.
Amy is very much a part-time user. Sometimes, managing diabetes goes well for her and she’s happy just to use the pump, not even the CGM, but when she wants to she can put a CGM on again and start looping. Throughout her A-levels, she was doing the looping full time. It meant she could be totally focused. She’d wake up every day in range.
Many people immediately try to focus on getting a lower HbA1c but Amy’s was already pretty good so we focused on increasing her time in range (between 3.9mmol and 10mmol), and also to get it working so that by keeping Amy in range she didn’t have to worry about going hypo/hyper. What we’re really chasing is the fact that she’s having to deal with it a lot less. There will be some days she doesn’t know what’s going on, but she knows she’s ok.
Diabetes UK and me
Diabetes UK has lots of publications, which I’ve always found helpful. The knowledge that there’s lots of research going on is very reassuring as well.
A few years ago, I became a peer supporter for the charity. One day a fortnight, I’d man the phone lines in my own house and if anyone wanted to talk about anything to do with diabetes, I’d do my best. That helped me learn more about Type 2.
Amy and I have been to the Diabetes UK offices to talk about Nightscout, the software that enables artificial pancreas looping and I spoke about closed looping at Diabetes UK’s professional conference.
Making sure that Amy is in a position where diabetes doesn’t burn her out. It’s about attitude. When Amy asked if we could still go on holiday to India, the fact that we did shows that diabetes isn’t going to stop her. Now, we’ve moved on quite a lot and diabetes doesn’t get in her way as much. When she’s looping, it’s taking care of virtually everything.
I want her to get through life doing the things she wants to do without having to keep stopping because she’s hypo or hyper. She did her A-levels and came out with three grade As. Her dream is of becoming a doctor. I do wonder if that would have been possible without some of these technologies. For her, when looping, it’s a lot less effort to deal with diabetes. She wakes up in range and can focus on her studies or exams.
What do you wish you’d known before?
I think we’ve coped with Amy’s diabetes pretty well, although I’d like to have known on day one that the needles weren’t six-foot long! Since we did that backpacking trip in India, I think we just get on and do stuff. When she was in the Scouts, she’d always be the first one up the climbing wall. She wanted to prove she could do things, diabetes or not.
I would have preferred that all this technology was available sooner. I’m more than happy to work with the DIY community to improve things for people with Type 1 diabetes, but I’d prefer it if there were commercial solutions. I know we’re in a very privileged position to be able to afford CGM and have the pump and be able to do the looping.
Amy is mentally in a very good position with her diabetes. I did say to her early on, fight whatever battle you want, but don’t rail against diabetes because you’re not going to win.
As a dad, I just wanted to fix the situation. The thing I really like is that when Amy’s ‘looping’, it’s ‘got her back’. We know she’s going to wake up on target or close.