Katrina's story: adapting as a parent of a child with type 1 diabetes

• Daughter Charlotte was diagnosed with type 1 aged 10
• Living with diabetes was a huge learning curve for the family
• Joined support group and discovered opportunities for children and young people with diabetes

Signs and symptoms

We were on holiday in the south of France a couple of months before Charlotte’s 11th birthday when it became apparent that she wasn’t right. It was very hot but she was drinking an awful lot and we noticed she was losing weight very quickly. She’d been slender before, but now she looked very thin. She wasn't overtired though – she was canoeing and walking as well as ever, but she must have been physically under great strain.

I’m a dentist and have some basic knowledge of diabetes as a condition, so I put two and two together and suspected it was type 1 diabetes. As soon as we got home we went to the GP and my suspicions were right. Then we went straight into A&E and learnt a lot very quickly after that!

My husband Colin and I don’t have any family history of diabetes and at that time we didn't know anyone else who had it – type 1 or type 2. Charlotte’s brother, James, was really, really worried about her, but he’s quite laid back and pragmatic about things so it didn’t affect him too badly. We also tried to approach Charlotte’s diagnosis in a positive way. 

The school were really good but they had no experience of diabetes so we had to teach them everything. We were lucky with the timing as fortunately, she was one of the older children in the school, so already had a strong friendship group, and they were really helpful and supportive. Her friends’ parents were great too – and the rounds of sleepovers weren't affected at all. You find out who your friends really are at times like that!

The hospital told us about the East of England Children and Young People's (CYP) Diabetes Network – an organisation they’re closely affiliated with, which runs events for children with Type 1 diabetes and their parents. Now Charlotte goes on their weekend camps once a year and has made some good friends.

In Easter 2019, the Network is taking a group of 15–19 year olds to Botswana for 10 days, to meet other children with type 1, share their experiences of the condition and help improve the information and facilities for families and medical staff attending the central/only diabetes clinic in the capital city, Gaberone. 

Charlotte leapt at the chance to go – she’s very keen and excited about it. It’s fantastic that she’ll get the chance to experience that, it will really broaden her horizons. She will be the youngest people going on the trip, so it’s a real opportunity to learn from the older ones and a good chance to become more independent, which is what all 14-year-olds are desperate for.

Diet, nutrition and active living 

We learnt how to carb count at the hospital in the first few days after Charlotte was diagnosed. It was very empowering for us as parents as this was something we could 'do' to help make Charlotte better. 

The way it was explained was simple and clear and practical to start with. Then a few weeks later, once she was much better, the more advanced carb ‘algebra’ was introduced to us. Fortunately, Charlotte is pretty good at maths, so that was a great help. My husband is a software designer so he’s good at the technical side. I'm a dentist so led the way doing injections!

We were planning to go to Center Parcs on a big family holiday the week after Charlotte was diagnosed and were worrying about how we were going to cope with all the activity and different foods. Lots of buffets, pancake house treats and people bringing meals to share... nightmare! We wondered if we should cancel.

The paediatric nurse in the hospital was wonderful and reassured us that we should definitely go and have fun. She said to Charlotte: “The only thing you need to make absolutely sure of is that you sample every flavour of the ice cream and then come back and tell us which one is the best.” It really lightened the situation for us.

It was a revelation to know that her diet wasn't restricted. Nowadays I still feel a frisson of annoyance when someone says, 'Oh, but Charlotte can't have that, can she?’ But I know I was just as clueless beforehand.

Our holidays usually involve walking and swimming in the sea, lots of snacks at random times and irregular mealtimes so that can be complicated theoretically. 

Charlotte wears a pump, but it’s not waterproof, so her blood sugars need to be checked and corrected regularly when she swims. Her age also means she is getting more independent, which is a good, normal thing, but it means much less control for me, which is hard. I feel I have to have a level of trust in her maturity which is possibly higher than I am ready for, but she hasn't let us down yet!

Work

Straight after Charlotte’s diagnosis, I had to cut back my hours at work significantly so I could go into her school at lunchtime and do her injections for the first few months. All my patients were very understanding and the practice manager worked hard to arrange it all for me. I realise how lucky I was and will always be grateful for that.

The support of friends and family has been the biggest help, as well as deciding to look for the positives, of which there are many if you look hard enough. It’s a terrible whirlwind to start with, but it settles down and becomes the new normal very quickly. And life’s full of changes – this is just one of them. We treat it like a little kink in the road, rather than a brick wall. 

Wish you knew before?

It’s difficult because hindsight gives you a very different point of view. I guess it would have been good to know how Charlotte would deal with her diabetes and that her way of dealing with it would change as time went on.

She was a quiet, often shy girl when she was smaller and parents always worry how their kids will handle life's curve balls, but I often think her condition has given her a core of strength – but who knows, that might have been there all along. It has certainly given her a few opportunities which she otherwise would never have had – the chance to help in the Botswana project, in particular, is an opportunity of a lifetime.

As soon as you learn about your child’s diagnosis, Diabetes UK is the first place you turn to. There’s lots of information on the website, you can get advice and it helps you to feel that this does happen to a lot of other people, so you’re not alone.

The website links and printed information was given to friends and family too – so it benefited many people, not just us.

We’ve raised some money for Diabetes UK through various things. We did an open garden event in our village in Cambridge, and Diabetes UK was one of the beneficiaries of that. I’m also in an orchestra and the proceeds from one of our concerts were donated to Diabetes UK. My husband, Colin, has also been raising money for Diabetes UK by doing a 10k run.

Biggest challenge

Having a restful sleep and not worrying is the biggest challenge! 

People’s lack of knowledge is a challenge too. So many people think type 1 diabetes is diet or lifestyle related, so they look at Charlotte and ask, “is that right?” You have to explain that it’s an autoimmune condition. Sometimes having to explain every time can be frustrating, but as a family, we had very little knowledge before it affected us.

I think the worst thing for me is feeding my child skittles when she is hypo and half asleep in the middle of the night because I spend my working days telling people not to snack on sugar and the dangers of eating after brushing last thing at night. It’s ironic!

Useful resources

Go to the Diabetes UK website and look at everything you can. I’d also recommend keeping in really close contact with the hospital and staff, educating yourself and learning as much as possible about it.