Childhood diabetes: 'Luckily, we caught it on time'
Twins Luke (left) and Michael Mullins from White’s Cross, Cork, both have type 1 diabetes. They have to weigh all their food to calculate the amount of carbohydrate it contains.
Childhood diabetes is on the rise. The number of new diagnoses is increasing by 4% every year. That figure is even higher in the under-fives, with the incidence in that age bracket growing by 5% annually.
Consultant paediatrician Dr Colin Hawkes sees this in his work in the diabetes clinic at Cork University Hospital (CUH).
“There are about 50 newly-diagnosed children at CUH every year – that’s one new diagnosis every week,” he says. “Nobody knows the reason why type 1 diabetes is increasing worldwide.” There are currently 500 children attending the clinic at CUH. They include 14-year-old twins Luke and Michael Mullins from White’s Cross in Cork. Luke was the first of the twins to be diagnosed and his was a classic case.
“He was seven when he started showing symptoms, but we didn’t know what to look out for,” says the boys’ mother Louise Sheehan. “He was drinking and peeing a lot but because he was at school for most of the day, we didn’t immediately notice.”
Children’s symptoms can be easy to miss, according to Dr Hawkes. “They tend to be subtle initially and include increased thirst, going to the bathroom more often, reduced energy, unexplained weight loss, extreme hunger, new bedwetting, and thrush in girls,” he says.
It was only when Louise and her husband David brought Luke swimming that they noticed how underweight he was. “We went straight to the doctor,” says Sheehan.
The doctor performed a simple finger prick test to check Luke’s blood glucose levels and rushed him to hospital. Because there had been a delay in his treatment, he had developed a condition called diabetic ketoacidosis, which can be fatal if left untreated.
“Luckily, we had caught it on time,” says Sheehan. “Luke was put on fluids and insulin and was back to his old self the following day.”
Everyone reacted more quickly when Michael began showing symptoms at the age of ten. “As soon as he started peeing more often and feeling thirstier, he told Luke and basically diagnosed himself,” says Sheehan.
The next step after diagnosis is to teach children and families how to treat diabetes. There is a lot to learn.
“With type 1 diabetes, the pancreas is unable to detect increases in blood sugar levels or produce insulin to keep those levels in the normal range,” says Dr Hawkes. “The treatment has to take over those two jobs. Fingerstick glucose checks or newer continuous glucose monitors detect glucose levels, and frequent insulin injections or insulin pumps are used to administer the insulin.”
As well as learning how to use the technology, the family must also be taught the importance of diet. “Every time the boys eat, even if it’s just a snack, they have to weigh their food to calculate the amount of carbohydrate it contains,” says Sheehan. “They input this information into the pump, and it regulates their insulin accordingly.”
Activity levels must be monitored too. “It’s a balancing act,” says Sheehan. “Everything from sitting still on a long car journey to riding their bikes means their carb intake and insulin has to be adjusted.”
Many families struggle to adapt to these changes in their daily routines. “Type 1 diabetes is a difficult disease to manage and stress, anxiety, and depression are extremely common as a result,” says Dr Hawkes.
It’s vital that families receive the help they need to overcome those challenges. “Well-controlled diabetes in childhood increases the likelihood of well-controlled diabetes throughout life, which reduces the risk of developing complications like blindness, kidney failure, and heart disease,” says Dr Hawkes. “It’s important to get treatment right in paediatrics.”
A well-resourced team is required for this. “The team is your lifeline in the early days,” says Sheehan. “You’re in daily contact for the first few weeks as they hold your hand through the process.”
International best practice is for children to have frequent access to a team of specialised nurses and dietitians. “Children have questions about their insulin dosage, about using technology, or even about managing diabetes with normal childhood activities like sports, sleepovers, or Halloween,” says Dr Hawkes. “The team has to be on hand to help.”
A specialist psychologist should be available too. “Up to 20% of children with diabetes suffer depressive symptoms and a psychologist plays a key role in identifying and addressing this as well as helping children and families cope with the burden of this disease,” says Dr Hawkes.
This is where CUH falls short. “We have half the number of nurses recommended for our number of patients and we do not have a dedicated children’s diabetic psychologist as they do in similar-sized centres in Crumlin, Temple Street, and Tallaght,” says Dr Hawkes.
He sees this as the only difference between CUH and the Children’s Hospital of Philadelphia, his previous place of employment where he served as clinical director of the top-ranked diabetes programme in America.
“Our team works tirelessly but we struggle to provide the same standard of care here,” he says. “We simply do not have the diabetes nurses needed to provide timely education and support and without a dedicated psychologist, we are not equipped to provide the psychological care these children need. Once we address these deficits, I see no reason why children at CUH wouldn’t have the same quality of care as the top programmes in the US.”
The twins have first-hand experience of these staffing shortages. “They visit the clinic every five to six months when they should visit every three months,” says Sheehan. “Every time they visit, it’s great. We all feel more confident and reassured afterwards. If only we could see them more often.”
The family have also felt the absence of a psychologist from the team. “You really are in desperate need of support, especially at the point of diagnosis,” says Sheehan. “Parents are struggling, and the child is feeling fear, anxiety, and sometimes even rage. As a parent, you can handle the practical stuff but dealing with the psychological and emotional stuff can be much harder. Having someone who understands the particular burden that diabetes is would be a huge help.”
As well as campaigning to increase staff numbers, Dr Hawkes also plans to develop a diabetes research programme at CUH.
“In Philadelphia, we had a very active children’s diabetes research programme and I’m keen to develop one here in Cork,” he says. “It would give children access to leading treatments through cutting-edge clinical trials and allow us to innovate and shape the future of diabetes. I am currently working with the CUH Charity and applying for research grants to get it started.”
He hopes the new children’s hospital will change things for the better too. “They need to learn [to understand] this condition while supporting each other and this shouldn’t occur in an uncomfortable six-bedded room that’s not been designed for children. Parents and children are unable to sleep in this environment and this makes it more difficult for us to teach them throughout their admission. I look forward to caring for children in an environment that supports our treatment.”
An estimated 95% of children diagnosed with diabetes have type 1.
It is caused by the body’s immune system destroying insulin-creating cells in the pancreas. Insulin is a hormone that helps the body move glucose from the bloodstream into cells where it’s needed for energy.
In healthy bodies, insulin automatically regulates blood glucose levels. This doesn’t happen in people with type 1 diabetes, which means that glucose builds up in their bloodstream.
Diabetic ketoacidosis occurs when there is not enough insulin in the body to provide glucose for energy. The body reacts by breaking down body fat, creating a by-product called ketones. Too many ketones can cause the blood to become acidic, leading to abdominal pain, breathing problems, and vomiting. If untreated, it can be fatal.
Treatment of diabetes starts with regular monitoring of the body’s blood glucose levels. Before modern technology, this involved pricking your finger with a stick, which was painful. Nowadays, there are wearable glucose monitors that connect to your phone (or the parent’s phone), keeping constant track of glucose levels and sending an alert if they get too high or too low.
Insulin must be injected into the body to adjust those glucose levels. In the past, this was done with a vial of insulin and a syringe. Modern technology means it can now be done via a pump that is worn on the body, delivering insulin every hour to match your body’s insulin needs.
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