Diabetes Handbook Information for Children and Young People with Diabetes and their families Follow us on Twitter @NHSaaa Find us on Facebook at www.facebook.com/nhsaaa Visit our website: www.nhsaaa.net All our publications are available in other formats Contents What is diabetes? 3 Meet the team 8 Education checklist 14 Food and diabetes 18 Exercise and diabetes 29 Diabetes Equipment and medication 31 Insulin Injections 37 Hypoglycaemia 46 Sick day guidance 56 Schools and nursery 63 Diabetes Clinic 67 Complications 73 Talking to teenagers 78 Oral Health 83 Travel 85 Glossary 88 2 What is Diabetes? Diabetes is a serious long term condition which means that the body is unable to control the level of glucose (sugar) in the blood due to a lack of insulin. Glucose is used by the body for energy. It comes from the digestion of foods and drinks containing carbohydrate. To control the glucose level in the blood the body makes a hormone called insulin in a gland called the pancreas. The cells in the pancreas which make the insulin are called islet cells. Insulin transports the glucose from the blood stream into the cells of the body, acting like a key opening the door to the cells, where it is turned into energy. Any glucose that is not needed immediately is stored in the liver or converted into fat. In diabetes the pancreas is no longer able to make enough insulin. There are different types of diabetes. The two main types are: • Type 1 Diabetes – This is an autoimmune condition, which means the body’s immune system that should attack viruses and bacteria has attacked and destroyed the insulin producing islet cells. The body is unable to produce insulin and insulin treatment is required. This is the most common type of diabetes in children. • Type 2 Diabetes – This occurs when the body still produces insulin, but there may not be enough or it is not transporting the glucose into the cells efficiently. This is called insulin resistance. Treatment will focus on 3 following a healthy lifestyle but taking tablets or insulin injections may be needed. This type of diabetes is less common in children. The Paediatrician (senior children’s Consultant) will discuss with you the type of diabetes your child has. The first few days. How was diabetes diagnosed? You may have visited your GP (local doctor) who will have noted any symptoms of high blood glucose levels your child may have had. The symptoms of high blood glucose levels are: • Toilet - Passing urine excessively and/or bedwetting • Thirsty - Drinking a lot • Tiredness • Thinner - Weight loss The doctor may have tested your child’s urine for glucose or taken a finger prick test (capillary blood glucose) before referring you to hospital. At the hospital a venous blood sample (from a small tube inserted into a vein in your child’s hand or arm) has confirmed that the blood glucose level is too high. Blood glucose levels are measured in millimoles per litre – written as mmol/l. In normal health the glucose level is between 3.5-7 mmol/l. A blood glucose level of above 11 mmol/l confirms the diagnosis of diabetes. 4 Blood samples were also taken from your child to check: a. Glycosylated haemoglobin (HbA1C) b. Thyroid function test, c. Coeliac antibodies d. Antibodies to confirm the diabetes type e. “Blood Gas” levels to check for Diabetic Ketoacidosis (DKA) Diabetes is not curable but can be controlled effectively with medication, self-blood glucose monitoring, making healthy food choices and keeping physically active. There are many things to learn about diabetes and the Children’s Diabetes Team will help you to understand the condition over time. However in the first few days you, and your child, will need to learn about: 1. What diabetes is 2. How to do injections 3. How to perform blood glucose monitoring 4. How to recognise and treat a hypo (low blood glucose) 5. Making good food choices. If your child takes other medication or has another condition it is important to discuss this with the doctors. 5 How will diabetes affect us? You may be feeling a mixture of emotions including anger, disbelief, sadness and possibly guilt. It may be that you are finding it difficult to cope, and feel that you are grieving for your child’s health. All these feelings are a natural reaction when people are given the news that their child has been diagnosed with diabetes. But it is important to remember that: Your child can still lead a full and active life. • Although diabetes is a common condition, it is individual and adjusting to diabetes in your life may take some time. • Try not to focus only on the diabetes and don’t forget that brothers and sisters may be feeling worried and/or left out. • Don’t worry if you forget some of the information which the Diabetes Team give you. They know that this is a stressful time and that people will learn about and adjust to diabetes at their own pace. • Information will be repeated as often as needed, and the team are happy to answer any questions you may have. Facts about Childhood Diabetes • About 25-40 children in Ayrshire & Arran develop diabetes every year. The number of children developing the condition is increasing worldwide. • There is no known cause for diabetes, but it is not related to anything you may have done or not done. 6 • Diabetes is not infectious; your child did not ‘catch’ it. • Diabetes is permanent and insulin is a lifesaving therapy. • Diabetes need not stop your child participating in activities and sports both as a child and an adult. • Everyone is nervous about doing the injections and blood tests; the team will support you until you feel more comfortable with them. You, your child, and their brothers and sisters may find adapting to diabetes quite difficult. Younger children especially may not be able to talk about their feelings, but they may be able to show you how they feel. Being tearful or ‘naughty’ is common. Your child may become more ‘clingy’ and want you to do things for them that they used to do for themselves. Allowing your child to express their feelings, however they can, is important, and reinforcing that they are still ‘themselves’ will encourage them to come to terms with their new situation. The important point at this stage is to keep the usual boundaries that they used to have – if something they do would have got them into trouble in the past. Then it must do so now. Doing something that would have earned them praise must continue to do so. Most important of all is: Your child has diabetes. They are not a diabetic child. 7 Meet the team Who’s who in the Ayrshire & Arran Children’s Diabetes Team? The team is made up of different health specialists who together look after all aspects of your child’s diabetes. Paediatrician (Children’s Doctor) These are the most senior doctors who specialise and co-ordinate the care of children and young people with diabetes. They will meet with you at the time of diagnosis and will see you and your child at the hospital and in the diabetes clinic Your child’s consultant paediatricians are: Children’s Diabetes Nurses The diabetes nurses will help and support you to look after your child’s diabetes, teaching you how to use the equipment, interpret the information from blood glucose tests and manage different situations at home or school. One nurse will be allocated to your family as your ‘named nurse’. Your nurses are: Your named nurse is: 8 Children’s Diabetes Dietitians The dietitians will help and support your family to make healthy food choices to help your child grow and develop normally. They will also teach you about carbohydrate counting and managing your child’s physical activity and sports. The dietitians are: The Psychologist The psychologist is available to help you and your child manage the emotional aspects of the diabetes. If you would like to talk with the psychologist please ask any member of the team. Your child’s psychologist is: The Ward based Doctors and Nurses The staff on the children’s wards are skilled in looking after children with diabetes at diagnosis or during other admissions e.g. for illness or operations and work closely with the Diabetes team. They will also give advice ‘out of hours’ when the Diabetes Team is unavailable. The Outpatient Department Staff The staff in the Children’s Outpatients Department will ensure you are given the appointments to see the team in clinic. They also make sure that the medical information in your records is up to date, and that blood tests and height and weight checks are carried out. 9 Expectations of the team and the families What you can expect from the Children’s Diabetes service Effective diabetes management is achieved by close working relationships between your child, you, the children’s diabetes team and your child’s school. From the Diabetes Team you can expect • Teaching sessions around the time of diagnosis and regular updates. • Telephone support 24 hours a day, during the working days from the Diabetes Team and out of hours provided by the Children’s Assessment Unit. • Routine contacts between clinic appointments from the dietitians and nurses. • Telephone support or home visits to manage specific issues. • You will be offered at least 4 appointments each year at the children’s diabetes clinic. • School visits to educate teaching staff at the time of diagnosis and for planning residential trips.