Up to five children and teenagers a week in Ireland are diagnosed with type 1 diabetes and, increasingly, it is not being spotted early enough to avoid a life-threatening complication.
A delay in diagnosis can lead to the development of diabetic ketoacidosis, known as DKA for short, which may necessitate treatment of the child in a hospital intensive care unit.
Four in every 10 Irish children with new onset type 1 diabetes have DKA at the time of their diagnosis, according to Diabetes Ireland. This is on the rise as, up to 2015, only about three in 10 of children had DKA at diagnosis.
"It just isn't on parents' radar," says Dr Suzanne Kelly, integrated care programme lead for diabetes with the Irish College of General Practitioners, "so it is up to health clinicians to think about diabetes in an unwell child and think about testing for it. The role of the parent is to try to access a healthcare professional in a timely manner if their child is unwell."
A delay of just a few days can make all the difference in the level of medical intervention needed to stabilise the condition.
“The decline can be very rapid,” she warns. Within a matter of days a child can go from being relatively well child to being quite ill and needing hospital care.
What is type 1 diabetes?
It’s a lifelong condition caused by a lack of insulin. This is a hormone that is made in the pancreas and is responsible for producing energy from food: it acts like a key to the door of your cells, letting sugar (glucose) in after eating carbohydrates. Too little insulin means the sugar in your blood can’t get into the cells and muscles to produce energy and it starts to build up in your bloodstream, causing high blood glucose levels (and diabetes).
Lack of insulin and energy leads the body to start breaking down fat to get energy instead and a byproduct of that process is acid, leading to DKA. The child will start to get a very strange smell in their breath and become very unwell.
And there are other “types”?
Yes, there’s also type 2 but type 1 is the focus of this article because, typically, it is diagnosed in early childhood or adolescence, although it can be diagnosed at any age. Type 2 is much more likely to develop in adulthood.
Those with type 1 make up just 10 to 15 per cent of the nearly one quarter of a million people believed to be living with diabetes in Ireland. It is estimated there are 2,750 people under 16 years of age living with type 1 diabetes and these have been tracked by the Irish Childhood Diabetes National Register since 2008.
While type 2 is much more common, a lot of it is preventable, unlike type 1. The latter is an autoimmune condition that causes the body to kill off insulin-producing beta cells, so you can no longer make your own insulin.
In type 2 there is an insulin deficiency because the body is either not using the insulin properly or there is not enough being produced to meet the demand. In this case, being overweight is one of the main risk factors and it's a relatively new phenomenon that occasionally, as the Irish Heart Foundation has reported, children as young as 12 in Ireland are presenting with type 2, due to overweight and obesity.
What’s “gestational diabetes” then?
That’s when diabetes, causing high blood sugar, occurs for the first time during pregnancy and then usually disappears soon after delivery. But, if poorly controlled, the risks include an extra-large baby, with possible delivery complications, or premature birth, and after birth the baby will need special care for a sharp drop in blood sugar.
If you’ve had gestational diabetes, it means you have the underlying genetic code to get type 2 diabetes, explains Kelly, who is a GP in Ballincollig, Co Cork. Lifestyle interventions, in the form of exercise and healthy diet, may be needed to avert that.
According to the Health Service Executive website, women who have experienced gestational diabetes have a 50 per cent higher risk of developing type 2 diabetes later in life, possibly within the next five years.
Is diabetes hereditary?
It seems you can inherit a predisposition to the disease, which is triggered by some environmental factor, but there are no clear answers. The causes of type 1 diabetes are unknown and there are very different hypotheses, says Dr Kate Gajewska, clinical manager for advocacy and research at Diabetes Ireland.
The offspring of a person with diabetes has a slightly higher risk of developing type 1 diabetes, but it’s still assessed as only between 1 to 8.5 per cent, depending on parent’s gender and age at diagnosis. For example, the risk for the child of a mother whose onset of diabetes was in adolescence is similar to that in the general population – about 1 per cent, she explains.
There’s a stronger link with family history in the case of type 2. This may be due to lifestyle influences, as obesity can run in families because eating and exercise habits tend to be passed on. “Family history is less relevant in type 1 diabetes,” says Kelly. “It generally starts in younger children and often there is no family history at all. It is an autoimmune disease, possibly triggered by exposure to a virus, she adds, but that is as yet an unproven theory.
What are the symptoms?
Diabetes Ireland has come up with a handy acronym, TEST, to help to recognise the signs of type 1 diabetes.
T is for thirst, which is increased; the child is likely to be unable to quench that thirst because of increased urination (see below). E is for energy, which is reduced; tiredness and weakness will be evident. S is for a sudden weight change; be alert to rapid weight loss over a short period, due to the body cells breaking down fat and muscle for energy because they can't access the glucose from food. T is for toilet trips; frequent urination, particularly at night, is a feature of the condition, as the body tries to get rid of the extra glucose in the blood.
Are there any other signs?
Minor symptoms include: increased appetite; lack of concentration; bed wetting; constipation; mood swings; and frequent infections.
Is there a particular age at which it strikes?
It can be any age, says Kelly. Adolescence or late adolescence is pretty common but it is fairly distributed throughout childhood.
The highest incidence is observed in children aged 10-14 years (44 per cent of all paediatric cases), according to a TCD-led study published last March of more than 1,420 cases logged in the national paediatric register, which goes up only to the age of 14. The incidence among those aged five to nine is a little less (38 per cent of cases), with 17 per cent in those under five years.
Although type 1 diabetes is typically considered a disease of children and young adults, Gajewska points to data from the UK Biobank, which indicates as many as 42 per cent of type 1 cases may be diagnosed between 31 years and 60 years of age. This suggests that we should be aware of symptoms and quick diagnosis at any age, she says.
Unlike in children, where the onset of type 1 is sudden, it can be more gradual in adults, “for example, six months instead of a couple of days”. But not as gradual as type 2, which can develop over years.
How is it diagnosed?
A simple test of a urine sample or blood can very quickly indicate whether or not there are elevated glucose levels in the body. This can be done in many pharmacies as well as in GP surgeries.
Many pharmacists do additional training in diabetes care and they can provide a rapid urine dip test, or some would have glucometers to read blood sugar levels, says Kelly. A drop of blood is drawn through a finger prick or, in a very small child, from the base of a foot.
“It’s a split second of discomfort and you have the result there and then.” A blood glucose reading of over 11 mmol/l would indicate that the child needs to go to the local hospital emergency department for early assessment and treatment. “Reassuringly, when we see a normal number we can say it’s definitely not type 1 diabetes and move on with what is probably something thing else.”
The concern is about the number of children presenting with type 1 who have already developed DKA. If GPs were seeing and testing them even four or five days earlier, it would mean huge financial savings for the health service, never mind the human cost, says Kelly. The need to put a child through intensive care for four or five days to regulate their condition could be avoided.
If DKA has set in, “you end up with a very sick child in the middle of the night in an A&E department with an on-call team who might not be diabetic specialists. As opposed to the child in a GP surgery at 11am a little bit sick, the blood sugar is 15 and now you have the diabetic team at the end of the phone – how much of a better outcome is that? All for the want of a glucose test.”
There has been concern during the Covid-19 pandemic that a child suffering from DKA at the onset of type 1 diabetes could show symptoms that mimic pneumonia. “In the current context where there is a focus on respiratory infection, there is a danger that the recognition of DKA may be delayed,” warns the National Clinical Programme for Paediatric Diabetes in guidelines published in April 2020.
What’s the treatment?
For any child diagnosed with type 1 diabetes, the treatment will be hospital-based with a specialist team. The immediate need on diagnosis is fluids, says Kelly, and then they need insulin, which will be delivered by injection several times a day or by an insulin pump, which is what most children will end up using. A diagnosis involves lots of education for a child and their family and that is handled by a specialist team.
Children and adolescents can go on to live a perfectly normal life, albeit it with a little bit more care, she says. The advent of insulin pumps really has made a massive difference.
What about dietary precautions?
The extensive education process for anybody with a diagnosis of diabetes will cover carb counting. “Families learn how to match insulin with the carbohydrates a child is eating. What they’re eating for their dinner might dictate how much extra insulin they’ll need. They can eat food that they like, as long as they match their insulin to it.” But they will need lifelong, specialist dietician support.
Are there complications to worry about?
“There are a lot of complications associated with type 1 diabetes,” says Kelly, “but you can avoid these complications with good adherence to management – checking your blood sugar; attending your appointments regularly; minding your feet; going to your eye doctor. As long as you can stay on board and understand your illness, there is no reason you can’t remain complication free for a very, very long time.”
It is hugely challenging during teenage years, she acknowledges, or in cases of mental health difficulties and intellectual disabilities. But the health teams are well used to that, and try to remain engaged with teenagers.
Improved technology, such as insulin pumps and glucose monitoring, means, adds Gajewska, that the dangerous complication of severe hypoglycaemia, which is associated with a significant overdose of insulin, is less likely now.
