If your child is diagnosed with diabetes, you may feel overwhelmed, angry and worried about the future. A diabetes care team can help with the challenges that lie ahead.
Most children who develop diabetes will have type 1 diabetes, which is where the body is unable to produce insulin. This means they will need regular insulin injections.
A small but increasing number of children in the UK are being diagnosed with type 2 diabetes, which can be associated with being overweight.
Type 1 diabetes, which this page focuses on, is not caused by being overweight.
It's perfectly normal to feel upset or worried when your child is diagnosed with diabetes. But having the condition doesn't have to take away your child's freedom, or end your usual family life.
What it does mean is that you have to carefully manage your child's condition as part of daily life.
Professor Peter Hindmarsh of the University College Hospital in London explains what you should expect if your child is diagnosed with type 1 diabetes.
The first few days
You and your child should be introduced to a specialist diabetes care team within one working day of diagnosis.
Your child will be offered care from this team, either as a hospital in-patient, or delivered in your own home. This will depend on your preferences and your child's needs.
If your child is admitted to hospital, there should be facilities for you to stay at the hospital too.
"The first few days with your care team is the starting point of your education about diabetes," says Professor Hindmarsh.
"You'll learn all about the condition, from blood glucose testing and giving insulin to your child, to food and exercise."
Your care team can include, among others:
- a consultant paediatrician who specialises in diabetes
- a children's diabetes specialist nurse
- a dietitian who is familiar with the needs of children
- a psychologist with a speciality in children
"Our aim is to get parents to a level where they're safe to go home with their child," says Professor Hindmarsh. "That typically takes around five days, but this can vary. The process should happen at your pace."
What can I expect from the care team?
You can expect detailed, practical sessions on how and when to test your child's blood sugar level using the finger-prick test, and how to give insulin injections.
A dietitian will assess your child's diet and discuss how the family diet can be adapted to the condition.
If relevant, your care team will also talk to you about how your child's diabetes will be managed at school or nursery. Your care team should contact the school or nursery – usually, a member of the team will visit the school to discuss what care your child will need.
If your child is younger than five years old, the team will discuss with you starting insulin treatment using an insulin pump system. This sounds daunting at first but it is a better way of giving insulin to younger children.
Your child's emotional response
"How the diagnosis affects your child emotionally is important. There's often a period of shock, then anger, then rejection of the idea, followed by gradual acceptance," says Professor Hindmarsh.
"Parents should talk about their feelings and those of the child, ideally with a psychologist."
The first few months
After a few days, you'll be confident enough to take the first steps towards managing your child's diabetes. This means taking them home if they had their first treatment in hospital.
You should still be in regular touch with your diabetes care team.
"At this stage, parents and children come to see the care team at the hospital around every one-to-two weeks," says Professor Hindmarsh. "We'll discuss how you and your child are doing, and answer any questions.
"There's regular telephone and email contact to make sure that parents have access to the team whenever they need it."
The diabetes care team will give you a 24-hour number in case of an emergency.
You and your child may find it difficult to adjust to life with diabetes at first. For example:
- you may have to change your family's diet
- your child may worry about being different from their friends
- you will both have to get used to a new routine of blood glucose tests and insulin injections
All this will get easier over time. Never hesitate to contact your care team with questions or concerns.
Once the condition is stable
Eventually, you'll feel confident that you can manage your child's diabetes without regular support from the care team.
By this time, you'll have a good understanding of how food and exercise affect your child's blood sugar level, and how to manage this with insulin.
You'll also understand hypoglycaemia, or 'hypos', when your child's blood glucose level drops too low and they have symptoms such as shakiness, sweating, tiredness, headaches or behaviour changes. You'll be taught how to prevent and treat hypoglycaemia and other situations.
"Once the parents and child are really settled, I'd expect to see them once every three months," says Professor Hindmarsh.
From the age of 12, these visits should include a comprehensive health check at least once a year. Your child will be checked for signs of damage to their eyes, feet, circulation and kidneys.
As your child gets older, it's important to work with your care team to teach your child how to manage the condition on their own.
"When your child is very young, ask them to do things like fetching the injecting kit, or pinching their skin while you do the injection," says Professor Hindmarsh. "Greater involvement grows from there."
During visits, the care team should let your child discuss their feelings and concerns, as they gradually get used to becoming an adult with diabetes.
Diabetes in teenagers
With so much going on at school or college, it's not surprising that teenagers can sometimes drop the ball when it comes to following their recommended treatment regimen. This can include missing their insulin injections and eating foods that they shouldn't.
A natural parental reaction to this is to try to monitor them every minute of the day, but this can undermine your child's growing sense of independence. Some experts recommend trying to foster a spirit of self-reliance in your teenager, discussing their condition in an open and adult way.
It's also important that your teenager understands that smoking and drinking too much alcohol can worsen their diabetes symptoms.
They may find it useful to talk to other people of their age who share their condition. The JDRF website provides details of support groups and events in your local area.
Teenage pregnancy and diabetes
Women with type 1 diabetes can experience complications during pregnancy, which means any pregnancy needs to be carefully planned.
For this reason, it's particularly important for teenage girls who are sexually active and not planning a pregnancy to be aware of reliable methods of contraception.
Diabetes support groups
Look up diabetes information and support groups in your area.
You and your child could also have a look at Upbete, an online forum supporting young people with diabetes.