WHAT IS TYPE 1 DIABETES?

Transcription

1 WHAT IS TYPE 1 DIABETES? A guide for parents of newly diagnosed children At Novo Nordisk, we are changing diabetes. In our approach to developing treatments, in our commitment to operate profitably and ethically and in our search for a cure.

2 With you all the way is a paediatric support programme created by Novo Nordisk, providing practical information on diabetes and its management for you and your child. This material has been reviewed by a panel of experts: Lead Diabetes Specialist Nurse Nicola Lewis, UK Paediatric Endocrinologists Prof Thomas Danne, Germany and Dr Nandu Thalange, UK This information is not designed to replace the advice of a healthcare professional. Please consult your healthcare professional if you have any questions or concerns about your child s condition. 1

3 The diagnosis Finding out your child has type 1 diabetes can be distressing. Diabetes can be life changing for both you and your child, but it doesn t need to limit your child s life or their future. Added to the emotional impact of learning your child has type 1 diabetes are a number of practical issues that may need dealing with. We hope the information in this booklet will answer some of the questions you may have about type 1 diabetes and how to care for your child. 2

4 KELLY HECTOR USA Kelly has type 1 diabetes It is important to remember that: It s not your fault There is nothing you could have done to prevent your child from getting type 1 diabetes. 2 It is not because you have done something wrong, such as allowing them to eat too many sweets. Diabetes is manageable Coming to terms with your child s diagnosis of type 1 diabetes Your child s diagnosis may have happened very quickly, or you may have suspected something was wrong for some time. It probably came as a shock to you there is a lot of information to take in and strong emotions to deal with. It is common for parents of children with diabetes to feel stressed, angry, upset or even guilty. 1 This is completely normal and you are not alone. 1 Treatments are available that can help your child manage their diabetes and lead a normal life. 3,4 Support is available Your child s diabetes care team are there to help, and resources are available to help you and your child manage their diabetes with confidence as they grow up and develop. 3 Don t be afraid to ask for help You need support just as much as your child does. Speaking to friends or family can make things easier. 2,3 It may also help to talk to other parents who are in the same situation as you, and understand how you are feeling. 2,3 Patient support groups and online forums can help you to make contact with other parents. Ask your healthcare professional about local support groups. An example of a patient website is listed below. 3 Example of forum:

5 What is diabetes? Type 1 diabetes Insulin is a hormone that is made by beta cells in the pancreas. 4 Insulin is needed by the body to help remove glucose (a sugar) from the bloodstream and turn it into fuel for tissues that need it, such as muscle and brain. 4 2 Glucose enters the bloodstream is known as an autoimmune disorder this means that your child s immune system is damaging the beta cells in their pancreas that make insulin. 5 In type 1 diabetes the body produces little or no insulin at all. 4 Diabetes is characterised by a partial or complete lack of insulin production by the body. 5 This lack of insulin results in high blood glucose, also known as hyperglycaemia. 4 Type 2 diabetes 1 3 The stomach changes food into glucose The pancreas makes little or no insulin occurs either when the pancreas does not produce enough insulin to maintain a normal blood glucose level, or when the body is unable to effectively use the insulin that the pancreas is producing ( insulin resistance ) causing hyperglycaemia. 6,7 This type of diabetes is closely linked with being overweight and is more common in older people 7 and in some ethnic minorities, such as African-Americans, Japanese-Americans and Latinos. 8 Type 2 diabetes is still relatively rare in children. This information is not designed to replace the advice of a healthcare professional. Please consult your healthcare professional if you have any questions or concerns about your child s condition. 4 Little or no insulin enters the bloodstream 5 Glucose builds up in the bloodstream Type 2 diabetes is progressive, but in many cases can be managed by healthy eating, exercise and lifestyle modifications. 7 4

6 How common is diabetes? According to the World Health Organisation, around 346 million people throughout the world have diabetes. 9 1 in 5000 children have diabetes, but this varies greatly by country % of patients with diabetes have type 2 diabetes and 10% have type 1 diabetes. 9 Type 1 diabetes is more commonly found in children than type 2 diabetes. 9 5

7 Common signs/symptoms of type 1 diabetes Common symptoms of type 1 diabetes are that your child may have experienced include: 3,4,11 Extreme thirst, including waking at night needing a drink Frequent urination (e.g. bedwetting), thrush or urinary tract infection Sugar in the urine A fruity-like smell ( ketones ) around the body often described as similar to the smell of nail polish remover or pear drops Fatigue, weakness, drowsiness Excessive weight loss over a short period of time, for no apparent reason This information is not designed to replace the advice of a healthcare professional. Please consult your healthcare professional if you have any questions or concerns about your child s condition. 6

8 ELOUISE BARRETT UK Elouise has type 1 diabetes Managing your child s diabetes Treatment with insulin Type 1 diabetes is a lifelong condition that is treated with injections of insulin. 3,4 Injections must be given every day multiple injections are required every day to maintain blood glucose control. 4 Your child may be given more than one type of insulin, including: 3,12 Long-acting insulin (also known as basal insulin) releases a steady amount of insulin throughout the day and is usually injected once or twice a day. Rapid-acting insulin (also known as bolus insulin) can be taken around mealtimes to provide control. Premixed insulin (which includes a long-acting and rapid-acting insulin) which is given at mealtimes. Your child s healthcare professional will advise you on when your child needs to take their insulin injections and how much insulin they need. 4 7

9 Before you leave the hospital, a doctor or nurse will have shown you and your child how to inject insulin with the device your child has been prescribed. Refer to the instructions supplied with your child s medication for further guidance. The most common places to inject insulin are the abdomen (belly), upper buttocks, thighs and the back of the arms, as advised by your healthcare professional. 12 It is important to know that insulin is absorbed at different speeds, depending on the site it is injected. It enters the bloodstream more quickly if it is injected into the stomach and more slowly if injected into the buttocks or thighs. 3 This information is not designed to replace the advice of a healthcare professional. Please consult your healthcare professional if you have any questions or concerns about your child s condition. 8

10 Monitoring blood glucose levels To help manage your child s diabetes, it is important that your child s blood glucose levels are monitored regularly. 3,13 As your child gets older they may feel comfortable monitoring their own blood glucose. 13 Food increases the blood glucose, whereas insulin and exercise lower the blood glucose. Monitoring blood sugar tells you if your child s insulin is working. It also shows you how physical activity and the foods your child eats are affecting their blood sugar levels. 2 You will probably be advised to test your child s blood glucose four times a day before every meal and before bedtime. 13 At times, you may also be advised to test after a meal, after physical activity or in the night. 3 Blood glucose testing is carried out using a meter. A test strip is inserted into the meter. You will then need to prick your child s finger and put a drop of blood onto the testing strip. The meter will then give you a blood glucose reading. 3 What is a good reading? Ideally you should be aiming to achieve the following long-term blood glucose targets: 3,14 Before a meal levels should be between 4.0 and 8.0 mmol/l ( mg/dl) 2 hours after a meal levels should be no more than 10.0 mmol/l (180 mg/dl) At bedtime levels should be between 7.0 mmol/l and 10.0 mmol/l ( mg/dl) These targets can be hard to achieve and it is unlikely that your child will reach these levels when they first start using insulin. If you struggle to achieve target levels over a long period of time, contact your healthcare professional. 9

11 Recognising signs of low blood glucose Low blood glucose is also commonly referred to as hypoglycaemia. 3,4 Episodes of low blood glucose are caused by an imbalance in factors which may reduce glucose insulin and physical activity and food or snacks that raise blood glucose. 3,4 Hunger Nervousness Shakiness Symptoms of low blood glucose include: 15 Sleepiness Confusion Sweating It is important that you, your family and any other people involved in your child s care learn to recognise the specific signs your child shows when they are experiencing hypoglycaemia. This is particularly important in children who are too young to clearly communicate how they are feeling. Lip tingling Grumpiness Dizziness or light-headedness You may want to encourage your child to use simple words to describe how they are feeling i.e. shaky or fuzzy. Speak to your healthcare professional about the best way to communicate with your child about diabetes and its symptoms. 10

12 11

13 Night-time hypoglycaemia Hypoglycaemia at night can be worrying. Signs that your child may be experiencing night-time hypoglycaemia include: 4,16 Sweating waking up with damp night clothes/sheets Waking up groggy headache/feeling tired, irritability and confusion upon waking Disturbed sleep crying out or nightmares during the night Unexpected low blood glucose reading upon wakening If you suspect hypoglycaemia, it is a good idea to talk to your healthcare professional who may recommend that you test your child s blood glucose during the night. It is a good idea to check blood glucose in the night whenever your child has had an increase in insulin dose in the evening. 4,16 Remember, there may be other causes for the above signs and sleep disturbances, so testing may help to rule out hypoglycaemia and set your mind at rest. 4,16 Night-time hypoglycaemia can be caused by: 3 High levels of activity during day or before bedtime Recovery from illness Poor food intake at evening meal It may also be caused by a higher than needed dose of long-acting insulin being given. Night-time hypoglycaemia may be prevented by: 3 Giving your child a small snack before they go to bed (e.g. a complex carbohydrate, slow release snack such as wheat cereal or porridge) Reducing the long-acting insulin dose Managing hypoglycaemia Your child s healthcare professional will provide a diabetes management plan for your child which will include how to manage episodes of hypoglycaemia. This may include drinking fruit juice, eating a snack 3, 4,17 or sweets or taking a glucose tablet. It may be a good idea to carry glucose tablets, fruit juice or sugar-coated sweets with you in case of emergencies. 3,4 If your child is at school, you may also want to pack an emergency supply in their school bag. 3,4 Your child s healthcare professional may also supply you with a glucagon kit for use in case of emergencies. 3,4 They will explain how this should be used and in what circumstances. This information is not designed to replace the advice of a healthcare professional. Please consult your healthcare professional if you have any questions or concerns about your child s condition. 12

14 Mealtimes At the time of diagnosis, your child s diabetes care team should provide you with some guidance around management of mealtimes. Food intake is important as it needs to be balanced with insulin doses in order to avoid low blood glucose or hypoglycaemia. Children with diabetes are advised, as any other child, to have a healthy, well balanced diet. When your child is first diagnosed with type 1 diabetes, managing mealtimes may seem complicated. But it will get easier over time and you will soon learn about the effects of specific foods and physical activity on your child s blood glucose levels. You may find it helps to write down your child s diet to help track your child s progress. You may also have an appointment with a dietitian who can help you plan meals. 25 % Protein Meat, chicken, fish, eggs Do not increase blood glucose 13

15 50 % Vegetables Broccoli, cabbage, cauliflower, lettuce, tomato, carrots, peas Do not increase blood glucose A balanced diet In general, children with type 1 diabetes have the same basic nutritional requirements as children without diabetes. 14 You should try and aim for a balanced diet including fat, protein, carbohydrates and a healthy amount of fruit and vegetables. Carbohydrates result in increased blood glucose levels, while protein and fat do not. Generally, children with diabetes are advised to eat three main meals each day with snacks in between, if necessary. 17 You may want to consider giving your child a complex carbohydrate snack at bedtime. 14 Having diabetes doesn t mean the child can t eat any sweets as treats. 3,4 They will be able to in moderation, along with appropriate insulin if necessary. 3,4 Please refer to the What to eat? leaflet for further information. 25 % Carbohydrate Potato, pasta, rice Lead to increases in blood glucose 14

16 Talking to people about your child s diabetes Growing up with type 1 diabetes can be hard, and your child may find it difficult to express how they are feeling. 3 Encourage your child to talk to you about their emotions and how their diabetes is affecting them. 2,3 They may also find it helps to talk to other children facing the same challenges. 2,3 Patient support groups can help you make contact with other parents and children in the same position. 2 Ask your healthcare professional about local support groups. Children who are a little older may have a better understanding of their condition and understand the words associated with their condition and treatment. 3 As they get older, they will be able to self-inject and take a more active role in managing their diabetes. 3 If you are worried about anything your child speaks to you about, contact your child s diabetes care team they may be able to put your mind at rest. 3 It is important that your child receives good support to help them manage their diabetes. Because you can t be with your child all the time, you will need to ask other adults to help your child manage their condition, especially when they are young. When your child is newly diagnosed with diabetes, there will be a lot of people that you will need to tell family, friends, schools and clubs. As your child grows, changes schools, makes new friends and takes up new activities, there will be many more people that you will have to talk to about their diabetes. Although many people will have heard of diabetes, it s unlikely that they will really know what it means. It s important that you have a good understanding of diabetes yourself before you try to speak to other people about your child s diabetes. Make sure that you talk to them using language that is appropriate for their age group and understanding for instance, a child is unlikely to understand the word hypoglycaemia but they may understand what low blood sugar means. Before you leave your child in the care of another adult, always make sure that they know that your child has diabetes and what they will need to do to help them manage it. Tell them about any warning signs they need to be aware of and what to do in case of hypoglycaemia or an emergency. Let them know if your child uses words such as shaky or fuzzy to describe how they feel when experiencing hypoglycaemia. Although it is your responsibility that anyone involved in your child s care understands what is involved in helping to manage their diabetes, you are not alone. We have produced two guides that will help provide a lot of the information that teachers and other people looking after your child will need to know: How to look after a child with diabetes and What about diabetes at school? This information is not designed to replace the advice of a healthcare professional. Please consult your healthcare professional if you have any questions or concerns about your child s condition. 15

17 Do not be afraid to ask for support Caring for a child with diabetes can be challenging and stressful, especially during the early stages of care. 18 Parents have reported hypoglycaemia as being a constant fear, especially when the child is very young and may not fully understand how actions like refusing to eat can affect their condition. 13 It s important that you receive support, as well as your child. Diabetes support groups can help to connect you with other parents of children with diabetes, to share experiences and exchange ideas with people who may understand what you are going through. You can also speak to your child s diabetes care team if you have any concerns or are having trouble coping. 16

18 References 1. Delamater AM. ISPAD Clinical Practice Consensus Guidelines 2009 Compendium: Psychological care of children and adolescents with diabetes. Pediatr Diabetes 2009; Suppl 12: Mayo Clinic. Type 1 diabetes in children. Available at: Accessed July Diabetes UK. Children and diabetes. Available at: Accessed July NIH Medline Plus Library. Diabetes. Available at: ency/article/ htm Accessed July Craig ME et al. ISPAD Clinical Practice Consensus Guidelines 2009 Compendium: Definition, epidemiology and classification of diabetes in children and adolescents. Pediatr Diabetes 2009; Suppl 12: Diabetes UK. Type 2 diabetes. Available at: Type-2-diabetes/ Accessed July NIH Medline Plus Library. Diabetes type 2. Available at: Mar/ethnic-group-influences-type-2-diabetesrisk.html Accessed July Diabetes.co.uk. Ethnic group influences type 2 risk. Available at: diabetestype2.html Accessed July World Health Organization. Diabetes fact sheet. Available at: factsheets/fs312/en/index.html Accessed July Global IDF/ISPAD guideline for type 1 diabetes in childhood and adolescence Available at: in_childhood_and%20adolescent_ Guidelines_2011.pdf Accessed July Couper JJ et al. ISPAD Clinical Practice Consensus Guidelines 2009 Compendium: Phases of diabetes in children and adolescents. Pediatr Diabetes 2009; Suppl 12: Bangstad HJ et al. ISPAD Clinical Practice Consensus Guidelines 2009 Compendium: Insulin treatment in children and adolescents with diabetes. Pediatr Diabetes 2009; Suppl 12: Silverstein JH et al. Care of children and adolescents with type 1 diabetes: a statement of the American Diabetes Association. Diabetes Care 2005; 28: NICE Clinical Guideline 15. Type 1 diabetes: diagnosis and management of type 1 diabetes in children, young people and adults. July Available at: Accessed July Clarke W et al. ISPAD Clinical Practice Consensus Guidelines 2009 Compendium: Assessment and management of hypoglycemia in children and adolescents with diabetes. Pediatr Diabetes 2009; Suppl 12: Diabetes.co.uk. Nocturnal hypoglycemia. Night time hypo. Available at: uk/nocturnal-hypoglycemia.html Accessed July Smart C et al. ISPAD Clinical Practice Consensus Guidelines 2009 Compendium: Nutritional management in children and adolescents with diabetes. Pediatr Diabetes 2009; 10(Suppl. 12): Banion CR, Miles MS, Carter MC. Problems of mothers in management of children with diabetes. Diabetes Care 1983; 6: Novo Nordisk website. Available at: Accessed July

19 18

20 About Novo Nordisk This information was developed by Novo Nordisk, a global healthcare company specialising in the care of people with diabetes. Novo Nordisk was started up almost 90 years ago by a Danish couple with a passion for changing diabetes. August Krogh was a professor at the University of Copenhagen and Nobel Prize winner and his wife Marie, a doctor and researcher into metabolic diseases, suffered from type 2 diabetes. They learned of insulin being developed in Canada and were determined to ensure access to insulin for everyone with diabetes, hence in 1923 Novo Nordisk was born. Since then Novo Nordisk has grown to become a world leader in the provision of diabetes products and support for patients of all ages. 19 We fully understand the challenges that children with diabetes face and are working together with parents, schools and healthcare professionals to improve the care of children with diabetes, as they grow up and develop. For more information about Novo Nordisk, please visit: This information is not designed to replace the advice of a healthcare professional. Please consult your healthcare professional if you have any questions or concerns about your child s condition. APROM ID#4684; approval date: January Changing Diabetes and the Apis bull logo are registered trademarks of Novo Nordisk A/S. Novo Nordisk A/S Novo Alle 2880 Bagsværd Denmark