If your child is diagnosed with diabetes, you may feel overwhelmed, angry and worried about the future. A diabetes care team can help you come to terms with the challenges that lie ahead.
It's perfectly normal to have difficult feelings when your child is diagnosed. But diabetes doesn't have to take away your child's freedom, or end your usual family life. However, it does mean that you have to carefully manage your child's condition as part of daily life.
So what should you expect? Professor Peter Hindmarch of the University College Hospital in London explains.
The first few days
Immediately after diagnosis - which usually happens in a hospital - you and your child should be introduced to a specialist diabetes care team.
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 wishes and on the needs of your child.
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 Hindmarch.
"You'll learn all about the condition, from blood glucose testing and giving insulin to your child, to food and exercise."
Your care team should 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 specialty in children.
"Our aim is to get parents to a level where they're safe to go home with their child," says Professor Hindmarch. "That typically takes around five days, but this can vary. The process should happen at your pace."
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 diabetes.
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 care team will visit the school to discuss what care your child will need.
How the diagnosis affects your child emotionally is important. There's often a period of shock, then anger, then rejection of the idea, then gradual acceptance," says Professor Hindmarch. "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.
But 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 two weeks," says Professor Hindmarch. "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."
Many care teams 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 the family diet. Your child may worry about being different from their friends. And you both have to get used to a new routine of blood sugar tests and insulin injections.
All this will get easier over time. Never hesitate to contact your care team with questions and 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 sugar 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 Hindmarch.
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 Hindmarch. "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.
