When your healthy, active child is diagnosed with diabetes, it can feel like the carpet has been pulled from under your feet. As a parent it can be a confusing and overwhelming time. Dr Meenal Mavinkurve, Consultant Paediatric Endocrinologist at IMU Healthcare and a Senior Lecturer in Paediatrics at the International Medical University, sheds some light and shares her thoughts on what it means to be diagnosed with childhood diabetes.
“Children with diabetes mellitus can achieve anything,” says Dr Meenal Mavinkurve. She has encountered parents who experience the feelings of shock, helplessness and hopelessness once their child is diagnosed with diabetes – but she emphasises that the condition has a solution, is very manageable and that teamwork between the family and the diabetes team, opens all doors of opportunity to children with diabetes.
“I really want patients and parents to understand that a child with diabetes can do equally well, or even better, than any other child who does not have diabetes. No doubt it is a steep learning curve with its fair share of emotional rollercoasters and new routines, but at the end of the day teamwork will allow children with diabetes to have a SWEET life as much as their peers,” she says, speaking of the importance to recognise this and to focus on the solutions, so that parents can better support their children with diabetes.
What is diabetes mellitus?
Let’s first take a look at what diabetes mellitus is. It centres around insulin, an important hormone made by an organ called the pancreas. Insulin is instrumental in getting glucose, which is a source of energy, into our cells. Diabetes mellitus is a condition where insulin is lacking (insulin deficiency) or where the action of insulin is diminished (insulin resistance). Both insulin deficiency or insulin resistance lead to high levels of glucose in the blood stream, which is diabetes mellitus.
The most common forms of diabetes mellitus in children are Type 1 (i.e. insulin deficiency, or T1DM) and Type 2 (insulin resistance, or T2DM). T1DM is an autoimmune condition, in which the body generates antibodies that destroy the beta cells in the pancreas. These are the cells responsible for producing insulin. In T2DM, the body can still make insulin, but the action of insulin is diminished.
Symptoms and signs of diabetes
The most common symptoms are the 4Ts of the Diabetes UK campaign: thirsty, toilet, thinner and tired.
Excessive thirst, excessive urination, waking at night to pass urine or wetting the bed at night are important symptoms to be aware of in children, as it may indicate a diagnosis of diabetes. Some parents may report ants in the toilet, because the ants are attracted to the “sweet urine” (i.e. the glucose in the urine). Children can also experience infections (fungal infections), unexplained weight loss or a failure to gain weight despite being hungry. “It’s important for parents to request their doctor to monitor their children’s weight and keep a record, irrespective of whether their child is ill or not. Growth is a good indicator of a child’s health,” reminds Dr Meenal.
“If you see any of these symptoms and signs, please see a doctor urgently. Parents should also enquire about the possibility of a diagnosis of diabetes and ask whether a test for glucose and ketones should be done,” advises Dr Meenal.
It starts with awareness
One of the important steps that can lead to an earlier diagnosis of diabetes is the awareness that diabetes mellitus is a disease that also affects children and that early recognition of the symptoms can lead to early diagnosis and treatment.
“If the symptoms are not picked up early, it can progress to a more severe presentation of diabetes mellitus with symptoms of vomiting, lethargy, breathlessness and tummy pain,” Dr Meenal says. These are the symptoms of diabetic ketoacidosis (DKA), a severe presentation of diabetes.
Even then, these same symptoms can sometimes be confused with other common paediatric conditions. A recent study by Mavinkurve et al, 2021 titled Is Misdiagnosis of Type 1 Diabetes Mellitus in Malaysian Children a Common Phenomenon?, 2021, demonstrated that the misdiagnosis rate in Malaysian children with T1DM was 38.7 percent . In this study, it was reported that children were commonly misdiagnosed with respiratory or gastrointestinal illnesses by healthcare professionals. Children younger than five years old had a higher risk of being misdiagnosed, presenting in DKA and being hospitalised in the intensive care unit. Overall, the study highlights that preventing misdiagnosis is an important factor in preventing DKA and a lengthy hospital stay.
The numbers keep rising
In 2019, the International Diabetes Federation Atlas (IDF 9th ed, 2019) reported 977 cases of diabetes in children below the age of 18 in Malaysia. This was more than double the number of cases registered in 2008 under the Diabetes in Children and Adolescents Registry, Malaysia. This was reported in The Star which stated that it “suggests on average, about 57 children are being diagnosed with diabetes each year.”
Of the two types, Type 1 is the more common in children, accounting for more than 90 percent of diabetes mellitus cases worldwide. The rates of T1DM diabetes in children have been rising worldwide and diagnoses are being made in younger children too. In Malaysia, the average age of diagnosis is between seven to eight years of age.
In the case of Type 2, a known risk factor is obesity, which is on the rise in Malaysia. It is typically seen in the adolescent age group. “Though there is a strong relationship between obesity and T2DM, there is an interplay of other factors such as family history and ethnic background,” explains Dr Meenal.
Navigating the risks
Along with a diagnosis of diabetes mellitus, be it T1DM or T2DM, comes the risk of developing complications which include high blood pressure, abnormal cholesterol levels, non-alcoholic fatty liver disease, and adverse effects on the kidneys, nerves and eyes. In both forms of childhood diabetes, doctors vigilantly monitor for complications and address them as and when they appear. However, optimising glucose control and ensuring compliance is the cornerstone of preventing complications.
In general, screening for such complications starts a few years after diagnosis, but it varies based on the type of diabetes and the age at diagnosis. For instance, T2DM requires complication screening from the time of diagnosis. In T1DM, screening starts after a few years. “In cases of T2DM, it is also important to screen for obesity-related complications; these may include obstructive sleep apnea (problems with snoring), non-alcoholic fatty liver, and in girls, polycystic ovarian syndrome (problems with menses), which have to be managed in tandem,” says Dr Meenal.
Managing diabetes
Managing childhood diabetes requires a partnership between the parents, the child and the healthcare team. The team is usually comprised of a doctor, diabetes nurse educator, dietitian and a psychologist; and each has a critical role. There is much to learn, on the part of the family, and much to impart on the part of the medical team. “Cooperation and partnership is the glue that supports the child to achieve his or her potential,” Dr Meenal says.
The basic principle of managing T1DM is to mimic the functions of the pancreas. Hence, children and parents need to learn how to check glucose levels (with a glucometer) several times per day, they need to understand what circumstances can make their glucose levels fluctuate and what action they need to take. They need to learn about the different insulins, how to inject them, how much to inject and how to count the carbohydrates in their meals. In general, a child with T1DM requires insulin with all their meals and a long-acting night time insulin too. This may vary according to what the doctor advises but a regime with multiple daily injections best mimics the pancreas. For children with T2DM, they would also have to understand about the oral hypoglycaemic medications which are prescribed.
Supporting your child with diabetes
Upon a diagnosis of T1DM, there are a lot of new tasks to be learnt and done for the child throughout his or her lifetime – and it is understandable that the parent’s first instinct would be to take on all these tasks for their child. However, as the child becomes older and independent in other aspects of life, it is important for parents to gradually hand over the responsibility of diabetes self-care to their kids, while continuing to be their support at all times. This enables the child to become independent, responsible and confident in their diabetes self-care over time. Young children with diabetes can still be involved in their diabetes care by doing simple things like getting the items ready for a glucose check which will progress to unsupervised glucose checks, once the child is more independent. School-going children will need to learn how to self-inject insulin too. “It’s about handing over responsibility slowly, while ensuring that you are there as a constant support,” says Dr Meenal.
Diabetes and diet
Having diabetes doesn’t mean a diet that is completely void of sweets and sugar. It’s all about moderation and following a healthy diet as any other child without diabetes should. However, children with diabetes are required to count the carbohydrates in the sweets they eat and inject insulin for it. For the obese or overweight child with T2DM, there would be a greater emphasis on limiting calorie-dense food options.
Some parents may give their children “carbohydrate-free” foods to avoid administering insulin. However, this is not advisable at all, as the recommendation is that children with diabetes mellitus should consume a healthy well-balanced diet. It is important to foster a good relationship with food and insulin for children with diabetes from the time of diagnosis.
Parents and patients may get exhausted with all the multiple tasks – glucose checks, counting carbohydrates and calculating insulin doses – and decisions that have to be made for any child with diabetes. However, it is important to remember that not every single day will be a perfect series of glucose readings, says Dr Meenal. “There will be readings that fluctuate, and achieving perfect glucose readings every hour of every day is not the main objective. Trying to understand the reasons for those fluctuations and rectifying those are more important,” she adds.
There is a solution
For a child diagnosed with diabetes mellitus, the road ahead will be marked with good days and difficult days. Patients and their families can get support from their doctors and work together to ensure the child with diabetes has an equally rich childhood as any other child. Awareness and education about childhood diabetes through reliable sources is critical.
Wrapping up the discussion, Dr Meenal ends on one final note and that is that “diabetes mellitus may be a chronic condition, but there is a solution. With the solution and teamwork we can help children with diabetes to achieve their rightful potential.”
Life with diabetes – IS sweet.
