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Shared experience

Abbie had just started nursery when she was diagnosed with type 1 diabetes

Jillian, whose daughter Abbie was diagnosed with type 1 when she was three years old, shares her story.

A mother and her young daughter sitting together in the sun

The initial signs

I’m Jillian, mum to Abbie who was diagnosed with type 1 diabetes when she was three years old. She’s five now.

Abbie had some sort of virus and was taking quite a while to get over it. She was going to the toilet a lot and drinking a lot. She was bed wetting which was quite unusual for her. She’d always been a good weight but, all of a sudden, she looked really thin even though she was eating.

There was a day where she lost concentration; she was just staring at the TV and not really listening or focusing. It was as if she was in a trance. So I called an ambulance and when they checked her bloods and ketones, her bloods were very high and her ketones were up at seven. So she got taken into hospital where they did the tests they needed to do and that’s how they came to the diagnosis.

You don’t think that it’s going to be diabetes, we didn’t know the signs. We felt that we’d let her down a wee bit.

Learning to manage type 1

We had to be shown how to inject Abbie with insulin before she could leave hospital. She was amazing. She took everything in her stride.

We received loads of useful information from our clinical team and used a Rufus bear from Breakthrough T1D UK to teach Abbie – and later her school – about life with type 1.

Our lives changed quite a lot when we got home. We had to carb count all her meals so things were a bit slower when preparing food because you’re having to add up absolutely everything. You count things about three times, just to make sure.

I had six weeks off work when she was diagnosed, and we kept her off nursery for the first month. She’d only just started in March, and this was in July so it was still the summer break. But she missed the start of term, just so that we could become better at dealing with her type 1 and more knowledgeable. When she went back to nursery, we knew what we were talking about and what we were doing.

Getting everyone on board

When we came out of hospital, we had direct contact still with the paediatric diabetes team. They came out to the nursery to train staff to administer Abbie’s insulin.  

I was making packed lunches so that I could carb count them and know exactly what she was having. We did that for the first six months, and then we moved over to school meals.  

The staff at nursery hadn’t really come across children with diabetes before so it was all new for them as well. At the time, we weren’t really allowed on the premises because of covid but I had to go in to support sometimes when she was getting her insulin. I think it was more a comfort thing for me, as a mum. You’re having to trust somebody giving your daughter an injection and it’s her life in their hands basically. 

Transitioning from nursery to school

Her nursery and school are both together which made it a bit easier for us to transition when the time came. We had a meeting with the head teacher, the deputies and the two teachers that she was going to have. And the ladies from the nursery and a couple of the nurses from the hospital came. We got a lot of support.

We set out a plan for how they were going to monitor her because at that time she had moved on to a flash glucose monitor (Freestyle Libre). So they were scanning her Libre to get her glucose readings whereas they were finger pricking at nursery.

Staying connected through technology

Abbie’s on a CGM now, a Dexcom G6, so her receiver’s on her mobile phone. Me and her dad both have Dexcom apps on our phone so we can see what her blood glucose is in the moment. I’m constantly on it checking.

The good thing about the Dexcom is that you can see if her glucose is going to drop down. The school either phones us, or we phone them just to say ‘look, this is what’s happening, can you maybe have a wee check on her and take the necessary action.’ They’re really good, we have been quite lucky with the school that she’s at.

There’s a girl at Abbie’s school who has a pump and the two of them go for their blood glucose checks together at lunchtime. So neither of them feel like the only one and they see that it’s happening to other people.

Communication is key

As a parent you need to make sure that you’re in constant communication with the school, keeping them updated. If you’re not happy with anything, you just need to talk to the nurses who are great, even if you want them to come in with you as a backup because they absolutely stick by you and offer you all the support that you need. They’re just at the end of a phone; no question is too silly for them.

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