The never-ending worry and sleepless nights of having a child living with type 1 diabetes has been revealed by four Devon mums who live in constant fear due to fast changing blood sugar levels.
Just five weeks before Christmas, nine-year-old Woody McElhone, of Budleigh Salterton, was admitted to the Royal Devon and Exeter Hospital (RD&E) after a urine test during a routine check-up for coeliac disease detected alarming blood sugar levels.
Woody’s only symptom was an unquenchable thirst and unknown to his mum Fran, he was days away from developing diabetic ketoacidosis (DKA), a life-threatening condition where a lack of insulin causes harmful substances called ketones to build up in the blood.
He spent a week on the hospital’s Bramble Ward where his parents suddenly found themselves thrust into a steep learning curve that was “fast, scary and tumultuous”. Life is now a constant battle of monitoring blood sugar levels, weighing food, and administering up to seven insulin injections a day.
Fran McElhone and her son Woody
(Image: Submitted)
Fran recalled: “Woody had been ridiculously thirsty over the weekend, downing about two litres of water before bed, two days before his diagnosis. The moment he was diagnosed changed our lives changed exponentially, forever. I don’t think I’ll ever sleep soundly again.
“Every time I wake up in the night I check my phone to see his blood sugar levels. Recently he went to bed and his blood sugar fell so low I had to shake him awake and slip three glucose tablets into his mouth.
“Most diabetics, like Woody, have a ‘continuous glucose monitor’ fixed on their arm which are linked to an app on their phone which sounds an alarm if sugar levels are worrying high or low. On this occasion, the alert had woken me up reporting ‘critically low’ blood sugar levels – 2.5 to those who know.
“I had to wait for his blood sugar to rise by checking the app, and only allowed myself to go back to sleep when the curve on the graph started rising.”
Type 2 diabetes is vastly more prevalent and often preventable, while type 1 is an auto-immune disease, life-limiting, and life-threatening. There are only around 270,000 people in England with type 1, and around 250 children and adolescents are under the care of the diabetic team at the RD&E.
Woody McElhone injecting insulin before lunch while on a walk in Dartmoor
(Image: Submitted)
Fran explained: “Their pancreases don’t produce insulin which is needed to regulate blood sugar. Whereas a normal person’s blood sugar remains fairly consistent with minor fluctuations between four and seven, a diabetic’s blood sugar is like a rollercoaster.
“When Woody’s diabetes was picked up, his sugars were 32. Above 14 and they’re in hyperglycemia territory – high blood sugar – and if they drop below four, they’re in hypo territory – low blood sugar.
“Our job is to keep their blood sugar as steady as possible which is incredibly hard. In the first few weeks, Woody’s sugars were swinging between two and 22 in 24 hours.
“Every time he eats carbohydrates, we have to weigh their food and then add up the carb content to work out how much insulin he needs to offset it. If he doesn’t eat all the food on his plate, he’s had too much insulin which brings blood sugar down.
“This means it’s likely to go too low and he’ll have a hypo whereby they feel queasy, lightheaded and have blurred vision – indicators they need immediate glucose.
“Too little sugar can mean they fall unconscious. The danger of consistently high blood sugar – over 14 – in the long term can lead to severe health issues. In the short term, if blood sugar is high, ketones are produced.
“Too many of these gremlins cause life-threatening DKA which can lead to organ failure, brain damage and, in severe cases, death.”
New diabetes patients are immediately assigned a member of the specialist diabetic nursing team, one of who is available 24/7.
Woody McElhone meeting Exeter City FC team who visited Bramble Ward and brought Christmas presents for the children in early December
(Image: Submitted)
Fran said: “That’s an indication of how serious the disease is. We had daily lessons, sometimes four hours a day, teaching us about how to manage the disease. It was the most overwhelming week of my life.
“Before getting fitted with an insulin pump, which doesn’t come without complications, children with type 1 diabetes need up to seven injections a day so their arms, legs, tummies and bums are pocked with bruises. But because they can only have insulin every two hours, if they’re hungry between jabs, they are limited to carb free snacks like meat, cheese and vegetables.
“They have to start eating within 30 minutes of their insulin, but not before 15 minutes. And no, they can’t have second helpings. Spontaneity and flexibility are things we no longer associate with food.
“Practicalities aside, the emotional toll is on another level. I have wept in supermarkets, waking along the road, at school, sobbed on the shoulders of friends, teachers, down the phone to my mum, and cried myself to sleep.
“Yes, it’s ‘manageable’ with constant blood sugar monitoring and obsessive food control, but it’s 24/7. What they’re going through is as relentless as it is unpleasant, yet our brave children wear smiles on their faces and never complain, so they are more than deserving of our understanding and compassion.”
To raise awareness and funds for diabetes research, 44-year-old Fran is running 50km across Dartmoor in February for Diabetes UK.
Due to how complex his health condition is, at Woody’s primary school, St Peter’s School in Budleigh Salterton, he has been assigned a teaching assistant who has been trained by a nurse to deal with carb counting and blood sugar monitoring, as has his class teacher. However, that will not be the case when he attends secondary school in 18 months’ time when he will have to fend for himself.
Fran said: “While he is at primary school, I am blessed with how well looked after Woody is so I can switch off for a few hours to work. But when he’s at ‘big school’, I won’t just be checking up on his blood sugar in the night, but during the day too.”
Fran’s daily struggles of coping with a child with diabetes is echoed by Katie Blundell Jonas of Budleigh Salterton. She has a seven-year-old son called Kitt who was diagnosed with type 1 diabetes 10 months ago after being admitted to hospital.
She recalled: “Kitt had been ‘off’ for a while but I’d put it down to various things. When I took him to the GP, he’d deteriorated so rapidly, the doctor sent him straight to A&E.
“I’ll never forget the look on the doctor’s face when she first saw Kitt, running into the hospital with him in my arms, the tubes, the beeping, the doctors and nurses frantically running around us, and the realisation that things were bad and Kitt might not be coming home with me. It was the longest and scariest night of my life.”
Katie continued: “We were catapulted into this whole new world. It was a crash course in science and maths. Even to eat an apple had become so complicated.
“Life became learning to constantly monitor and calculate Kitt’s levels, test his insulin/blood sugars/ketones, learning to do finger pricks, insulin injections, the difference between hypo and hyper, and how to adjust things if he exercises, is excited or poorly.
“Plus, there was so much equipment. Our new normal was about to become very different. It was so daunting.”
Determined not to let diabetes get in the way of living an active, outdoorsy life, Katie took her sons camping in the summer holidays. However, with no phone signal for the app to sound the alert, Kitt fell unconscious due to low blood sugar in his sleep.
Unable to wake him, Katie followed emergency advice previously given to her and rubbed prescribed glucose gel onto his cheeks to revive him.
She said: “No two days are the same, and you can do exactly the same on two different days but their blood sugar will behave differently, so you never know what to expect.”
Nai Cooper and her daughter Willow
(Image: Submitted)
The life-changing ’emotional rollercoaster’ has also been experienced by Nai Cooper, of Exeter. Her nine-year-old daughter Willow was diagnosed with type 1 diabetes in October. She had lost weight and been super thirsty and hungry in the days prior.
It was six weeks before she could return back to school after her teachers had been trained to deal with diabetes.
Nai said: “It’s been massively life-changing, challenging and an emotional rollercoaster. One of the hardest parts is having to wake up in the night so much and sort out Willow’s hypos.
“Sometimes she’s late to school or has to have days off because diabetes can make you feel unwell. There’s so much to think about and we have to be more vigilant with her wider health now, with more dentist and eye appointments because diabetics are at a higher risk of gum disease, eyesight problems, and peripheral neuropathy.
“As a parent, if you suspect anything, get your child seen as soon as possible, because the risk of ketoacidosis is serious.”
She added: “Life isn’t as carefree and easy as it was, and sometimes I shed tears in mourning for our old life, but I genuinely rejoice in the strength, support and kindness from people, which our new life has shown us.”
Visit your GP as soon as possible if you experience the main symptoms of diabetes, which include:
- feeling very thirsty
- peeing more frequently than usual, particularly at night
- feeling very tired
- weight loss and loss of muscle bulk
- itching around the penis or vagina, or frequent episodes of thrush
- blurred vision
Type 1 diabetes can develop quickly over weeks or even days.
Weight loss is common in people with type 1 diabetes when it first develops and before it’s treated, but it’s less common in people with type 2 diabetes.
Many people have type 2 diabetes for years without realising because the early symptoms tend to be general, or there are no symptoms at all.
Visit the NHS website for more information.
Keen to spread more awareness about diabetes and its impact on children, Stacey James, of Budleigh Salterton, has shared her experiences.
She has a seven-year-old daughter called Daisy who was diagnosed with type 1 diabetes two years ago.
Stacey said: “It’s been a huge learning curve and we’re still learning what works and what doesn’t even now, two years down the line.
“For us as parents, it’s more of a worry than it is for Daisy. We very rarely sleep through the night because of various diabetic alarms. Over the two years, we’ve relaxed and it’s become part of our daily lives as much as it has for Daisy.
“Things do get easier with time and it all becomes less terrifying.”
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