NOVO NORDISK CUSTOMER CARE CENTRE *

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1 NOVO NORDISK CUSTOMER CARE CENTRE * * Call charges may vary, please check with your service provider. Calls may be recorded for training purposes. REPORTING OF SIDE EFFECTS If your child experiences any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the packaging leaflet. You can also report side effects directly via the Yellow Card Scheme at By reporting side effects you can help provide more information on the safety of this medicine. Changing Diabetes and the Apis bull logo are trademarks of Novo Nordisk A/S. UK/NR/1112/0051b(1)a. Date of preparation: January 2016

2 Any questions on type 1 diabetes? Frequent questions and common terms 2

3 With you all the way is a paediatric support programme created by Novo Nordisk, providing educational materials for healthcare professionals, children and young people with type 1 diabetes, and their parents. This material has been reviewed by a panel of experts: Lead Diabetes Specialist Nurse Nicola Lewis, UK Paediatric Endocrinologist Dr. Nandu Thalange, UK Changing Diabetes is a global commitment by Novo Nordisk for improving conditions for the millions of people who live with diabetes around the world today, and for those who are at risk of developing diabetes tomorrow. This information is not designed to replace the advice of a healthcare professional. Please consult your diabetes care team if you have any questions or concerns about your child s diabetes. 2

4 Frequently asked questions Here are some of the most common questions asked by parents of children with diabetes: SUDE IGDAR Sude has type 1 diabetes WHY HAS MY CHILD GOT TYPE 1 DIABETES? Your child has been diagnosed with type 1 diabetes, an autoimmune disease. An autoimmune disease is when the body s immune system attacks and destroys healthy body tissue by mistake. In type 1 diabetes, this means that the immune system is destroying the beta cells that make insulin in the pancreas. Your child is therefore unable to produce enough insulin to keep blood glucose levels normal. The pancreas has many other functions in the body which are not affected by type 1 diabetes. Unfortunately, type 1 diabetes is not preventable. However, research is under way to investigate whether the immune system can be controlled to switch off the immune attack. For the time being, there is nothing that you could have done to prevent your child from developing type 1 diabetes. A person s risk of developing type 1 diabetes depends on the particular genetic make-up of their immune system. It is believed that the trigger for developing type 1 diabetes is most likely a viral infection in early life the immune system tags the beta cells of the pancreas as virus-infected and starts destroying them. When 80 90% of the beta cells have been destroyed, diabetes develops. Getting glucose levels under control as soon as possible after diagnosis may help the surviving beta cells recover some function. This can lead to a period of very stable blood glucose levels, which diabetes specialists call the honeymoon or remission phase. 3

5 P.J. PIMPINELLI P.J. has type 1 diabetes WILL MY OTHER CHILDREN ALSO GET TYPE 1 DIABETES? If one of your children has type 1 diabetes, you may worry that other siblings will be affected too. Close family members have similar genetic make-up. So, while type 1 diabetes is not hereditary, family members are genetically more at risk of developing autoimmune diseases, such as type 1 diabetes. There are a number of hospitals in the UK and worldwide conducting research which can identify whether you or another family member is at risk if you are interested in knowing more, ask your diabetes care team. It is important to know, however, that the risk is small around 6 10% in close family members. IS THERE A CURE FOR TYPE 1 DIABETES? Currently, there is no cure for type 1 diabetes. However, it can be managed successfully with insulin, given either by injections or an insulin pump, in combination with a healthy, balanced diet and regular physical activity. 4

6 WHAT ABOUT THE FUTURE OF DIABETES MANAGEMENT? In some countries, insulin inhalers or mouth sprays are available, but these are not available in Europe at the moment. Insulin tablets are also in development. Pancreas transplants or, more recently, beta cell transplants have been successfully used in adults with type 1 diabetes. However, the effect of the transplant is usually temporary and powerful anti-rejection drugs with major side-effects are needed to stop the immune system destroying the transplant. There is also a severe shortage of organs and tissue for transplantation. To get around this, scientists have been working to genetically engineer insulin producing cells in the lab, using special tissue called stem cells. Research is underway to see if the immune process can be controlled, either with drugs or by reprogramming the immune system, not to destroy the insulin-producing beta cells. WILL MY CHILD ALWAYS HAVE TO TAKE INSULIN? Insulin is essential for life you can t do without it. For now, this means, your child will need to have insulin every day. This is because their pancreas cannot produce the insulin needed to control glucose levels. The insulin device, whether it is a pen for injections or a pump, will provide them with the insulin they need. WHAT ARE THE GOALS FOR MY CHILD S BLOOD GLUCOSE LEVELS? Your child s blood glucose levels should be tested at least five times per day research shows that 7 10 tests a day are associated with better glucose control. Ideally they should be aiming to achieve the following long-term blood glucose targets, although your diabetes care team may suggest different targets to suit individual situations. On waking levels should be between 4 7 mmol/l Before a meal levels should be between 4 7 mmol/l After meals levels should be between 5 9 mmol/l For older teenagers, when driving, levels should be at least 5 mmol/l Before sport, or other physical activity, aim for a glucose level of around 7 10 mmol/l High or low blood glucose affects concentration, well-being and school achievement, as well as increasing the risk of long-term diabetes complications. It is therefore crucial to get blood glucose levels as close to normal (4 7 mmol/l) as possible. These targets are difficult to achieve and no-one has perfect control all the time particularly when they first start using insulin. There can be conflict between children and their parents or other carers about blood glucose targets if you struggle to achieve target levels, your diabetes care team will be able to give you support. Your child will have a blood glucose meter and testing strips which they can use to continually test their blood glucose levels. 5

7 6 WHAT IS CONTINUOUS GLUCOSE MONITORING? Some children especially very young children or those experiencing unpredictable hypoglycaemia (or hypos) may be offered a continuous glucose monitor (CGM). These measure blood glucose under the skin, continually, and alarm if the glucose level is out of range. They sense glucose through a tiny electrode inserted through the skin. The electrode is connected to a small transmitter which sends the results to a reader, or mobile phone. The electrode is worn for 5 7 days, or more. These monitors require regular blood glucose checks (usually twice a day) to make sure they are reading correctly. Other systems for measuring glucose without the need for regular blood checks are available for people to buy, but are not currently available through the NHS. Whichever method you are using to check glucose levels, it is important that you, your child (if they are old enough) and other carers know how to use it and how to take the right steps to correct high or low blood glucose. Your diabetes care team will help you to understand everything you need to know. HOW DO I KNOW WHEN MY CHILD S BLOOD GLUCOSE LEVEL IS TOO LOW? If your child s blood glucose level is low, they may be experiencing a hypo. Every child is different but the most common signs and symptoms are: Hunger Nervousness Shakiness Sweating Lip tingling Dizziness or light headedness Sleepiness Behaving out of character Confusion In extreme cases severe hypoglycaemia with coma or seizures can occur At first it may be hard to recognise signs, but you and your family will get to know them over time. If you are unsure, test their blood glucose. People without diabetes start to get these symptoms when their blood glucose is below 3.1 mmol/l. Many children with diabetes do not report any hypo symptoms above this level, but if you find the blood glucose level is 3.9 mmol/l or lower, you should regard this as a hypo, and take appropriate action. This is important, as the blood glucose level may still be dropping, and it is important to avoid severe hypoglycaemia. If you are using CGM, the glucose level shown will usually be lower than on a blood glucose check, and will take longer to go back to normal. If your child has a hypo alarm on their CGM, you must do a blood glucose check to find out what the actual level is, and be guided by the blood glucose level rather than the CGM. You should encourage your child to know their own symptoms of low blood glucose, and encourage your child to use simple words to describe how they are feeling, i.e. shaky or fuzzy.

8 SHOULD BLOOD GLUCOSE LEVELS BE KEPT HIGH TO AVOID HYPOS? No. Although hypos may sometimes be scary, they are manageable. A small number of children experience severe hypos. If your child has a severe hypo, speak to your diabetes care team. There are a variety of ways to reduce the risk of severe hypos happening in the future. It is harmful to your child for blood glucose levels to be too high. High blood glucose in your system means you do not have enough insulin. This can lead to the acute, life-threatening condition, diabetic ketoacidosis, as well as leading to premature complications of diabetes in the long-run. When glucose levels are out of range either high, or low it affects behaviour, mood, concentration and school achievement. When there is a shortage of insulin, the body cannot use all the glucose available and instead breaks down fat for energy, producing chemicals called ketones. In high levels, ketones are poisonous, and cause diabetic ketoacidosis (DKA). This is an emergency, and needs urgent medical attention. HOW DO I KNOW WHEN MY CHILD S BLOOD GLUCOSE LEVEL IS TOO HIGH? Glucose is too high if it is above 7 mmol/l before a meal and above 9 mmol/l between 2 3 hours after a meal this is known as hyperglycaemia. Symptoms of hyperglycaemia include: Passing more urine than normal or bed-wetting Being thirsty Being very tired, or being unable to keep up with other children doing normal activities Having headaches Poor behaviour and concentration If your child has any of these symptoms, and their blood glucose is very high, or they are vomiting whatever the glucose level, it is important to check their blood ketones using special ketone testing strips and a meter. Blood ketone levels above 1.0 are abnormally high and you would know to contact your diabetes care team right away. If above 3.0, ketoacidosis is possible. If your child has high blood glucose levels regularly then they may experience less symptoms, as their body can get used to running high. By checking blood glucose regularly you will be aware of their levels and will be able to seek advice to reduce them. ALEX SILVERBERG Alex has type 1 diabetes 7

9 8 ANA MIRIAM MÈNDEZ VALDEZ Ana has type 1 diabetes

10 DOES HAVING DIABETES MEAN MY CHILDREN CAN T EAT SWEET/SUGARY FOODS? Having diabetes doesn t mean that your child can t eat any sweets as treats, but you will need to help them to learn how to balance food intake with insulin doses and exercise. When you learn how your child s body responds to eating and taking insulin they will be able to have sweets in moderation, along with the appropriate insulin and regular activity. When sweets are offered, your child should explain that they have diabetes and know that they can either eat a small amount and take the rest home, or take them all home. CAN MY CHILD STILL DO SPORTS? Yes. At least 60 minutes per day of exercise is recommended for all children (whether they have diabetes or not). Exercise helps keep blood glucose levels stable, with lower insulin doses. You should know that exercise reduces blood glucose levels, so your child may need a snack before exercise and/or to reduce their insulin dose for the meal before, and sometimes after, exercise to prevent hypos. Your diabetes care team will guide you on how to manage your child s diabetes in relation with their sport. CAN WE STILL GO ON HOLIDAY ABROAD? Having diabetes will not prevent you from going away on holiday, but it will require some extra planning. For instance, you will need to make sure you have enough insulin for your stay and that your accommodation has a fridge to store it in (if you are travelling to a hot climate). You should also take out the correct type of travel insurance to cover your child s care. You will need to carry a letter with you stating the need for your child to carry insulin with them at all times when flying. You can get this from your healthcare team. It is advisable for your child to carry some form of identification stating that they have type 1 diabetes and require insulin a card, a bracelet or medical ID in their smartphone are suitable. Make sure you have contact details ( and phone/text numbers) for your diabetes care team just in case you need help while you are away. ARE THERE ANY SPECIAL PRECAUTIONS I SHOULD TAKE WHEN MY CHILD IS ILL? It is vital that children continue to take insulin (though they will need to adjust the dose according to carbohydrate intake and blood glucose levels), to eat and drink, and to check blood glucose regularly. If your child has high blood glucose levels, or is vomiting regardless of glucose levels, it is necessary to check for ketones using blood ketone testing strips and a meter. High levels of ketones (above 1.0 mmol/l) indicate that they may be at risk of diabetic ketoacidosis (DKA). This is a medical emergency. WHAT ABOUT WORK? There are very few jobs that children with diabetes will not be able to do when they grow up; however, there are some jobs that have restrictions preventing people with type 1 diabetes from applying. If a job involves driving, it is vital that an employer and the DVLA are aware of a person s diabetes. It may be harder for a person with diabetes to get certain types of insurance. Your diabetes care team can give you more information about this. 9

11 SHOULD I BE CONCERNED ABOUT LONG-TERM COMPLICATIONS? At least four times a year, your child s long-term diabetes control will be checked by a blood test which measures HbA 1c levels, or the amount of glucose that is being carried by the red blood cells in the body. The HbA 1c levels indicate the blood glucose levels for the previous two or three months. Good blood glucose control therefore good HbA 1c levels are vital in preventing long-term complications. Note that there are certain blood diseases such as sickle cell anaemia which mean that HbA 1c is not a suitable test. Your diabetes care team will explain what alternative options there are for monitoring long-term control. LARS MYHRER Lars has type 1 diabetes A HbA 1c target level of 48 mmol/mol (6.5%) or lower has been scientifically proven to greatly reduce the risk of long-term complications. In certain circumstances your child may be given a higher HbA 1c target but the lowest risk of long-term problems is seen with near-normal glucose levels, hence aiming for 48 mmol/mol (6.5%) for most children. In order to detect early signs of long-term complications of diabetes, your child will have regular routine check-ups, including height, weight, and blood pressure. They will have an annual test of thyroid function. From age 12, they will be offered an annual eye examination and blood and urine tests for kidney function, cholesterol levels, etc. 10

12 Diabetes Dictionary When you find out your child has diabetes, there will be a lot of information to take in. Over the next pages, you will find a guide to some of the most common terms used when talking about diabetes. 11

13 12 TRINITY ALFARO Trinity has type 1 diabetes

14 AUTOIMMUNE DISEASE A disorder in which the body attacks its own cells. In type 1 diabetes, the body mistakenly damages beta cells in the pancreas that make insulin, resulting in high blood glucose. BASAL INSULIN Basal (or background) insulin keeps blood glucose levels under control between meals and overnight. Depending on the kind of insulin your child has, the insulin may be mixed with another chemical to slow down its absorption or, more commonly, the structure has been chemically altered. See long-acting insulin analogue. BETA CELLS Cells in the pancreas that make insulin. BLOOD GLUCOSE The concentration of glucose the body s main source of energy in the blood. BOLUS INSULIN To keep blood glucose levels under control after eating, bolus insulin is taken with meals. Bolus insulin is known as short-acting insulin or a rapid-acting analogue, as it has to act very quickly after food is eaten. See rapid-acting analogue and shortacting insulin. CARBOHYDRATE Type of food that provides the body with energy. Carbohydrates are mainly sugars and starches that are broken down into glucose a simple sugar that the body s cells use as fuel. DIABETIC KETOACIDOSIS (DKA) A serious, life-threatening condition. If the body is unable to use glucose for energy because of a lack of insulin, it starts to burn fat as fuel instead. This leads to the production of ketones and a build-up of acids. Above a certain level, these are poisonous. Nausea, vomiting and abdominal pain are typical symptoms. Checking ketones (preferably in the blood) can help to distinguish DKA from other causes of vomiting such as gastroenteritis. If blood ketone levels are above 1 seek help immediately. FASTING BLOOD GLUCOSE (FBG) This is the blood glucose concentration after not eating anything for at least eight hours. This test is a good measure of the effectiveness of your insulin overnight (whether by injection or pump) as it is not affected by food or exercise. GLUCAGON Glucagon is an emergency treatment for severe hypoglycaemia. It occurs naturally in the body, and it raises blood glucose levels by releasing stored glucose (glycogen) from the liver. Intramuscular glucagon may be given by injection into the leg when a child has a severe hypo. You will receive a glucagon kit, and your diabetes care team will show you when and how to use it. HbA 1c The formal medical name for HbA 1c is glycated haemoglobin the amount of glucose carried by haemoglobin. This reflects levels of glucose in the bloodstream over the previous 2 3 months. It has been shown scientifically to be a powerful predictor of long-term diabetes complications. Good HbA 1c levels are vital to prevent long-term complications from developing. A HbA 1c target level of 48 mmol/mol (6.5%) or lower is ideal for minimising the risk of long-term complications. 13

15 HORMONE A hormone is a chemical released by glands within the body (like the insulin-producing beta cells in the pancreas), to help it control vital body functions. Insulin is a hormone which controls glucose levels in the bloodstream and certain tissues like muscle and fat. HYPERGLYCAEMIA (OR A HYPER ) HIGH BLOOD GLUCOSE This term is used for high blood glucose levels. This occurs when there is insufficient insulin to maintain normal glucose levels. Hyperglycaemia happens when blood glucose levels are too high above 7 mmol/l before a meal and above 9 mmol/l between 2 3 hours after a meal. HYPOGLYCAEMIA (OR A HYPO ) LOW BLOOD GLUCOSE This term is used for low blood glucose levels. Hypos result from an imbalance between insulin, food and exercise. For example, they can be triggered by forgetting to reduce insulin before strenuous exercise, or inadequate food or snack intake. A blood glucose level of 3.9 mmol/l or lower is considered a hypo. INSULIN PUMP A device that delivers insulin via a small tube and is inserted under the skin in the abdomen and delivers a steady flow of rapid-acting insulin continuously. Patients on insulin pumps only have one kind of insulin in their pump bolus insulin as the pump delivers a small amount of insulin all the time, with extra being needed for meals and snacks. KETONES Chemicals that are produced when there is a shortage of insulin in the blood so that the body has to break down body fat for energy. LONG-ACTING INSULIN ANALOGUE About half the insulin our bodies require is to control blood glucose levels, even when we are not eating. We call this basal insulin. Long-acting insulin analogues are genetically modified forms of insulin designed to be more predictable and stable. They are injected once or twice a day and keep glucose levels normal between meals and overnight. It is best to inject these at the same time every day. MEDIUM/LONG-ACTING HUMAN INSULIN This type of insulin, often called Neutral Protamine Hagedorn (NPH), lasts around hours and is usually given twice a day. It has a peak action of up to 12 hours after injection. See basal insulin. MILLIMOLES PER MOLE (MMOL/MOL) AND MILLIMOLES PER LITRE (MMOL/L) The units of measurement for HbA 1c, blood glucose and ketones. ORAL ANTIDIABETIC DRUGS (OADs) Oral medications that help to control blood glucose (e.g. metformin). They are used for type 2 diabetes, sometimes in combination with insulin. Some OADs have the potential to be useful for type 1 diabetes, and much research is ongoing in this area. PANCREAS An organ in the body that stretches across the back of the abdomen behind the stomach. The pancreas is where insulin and digestive enzymes are made. POST-PRANDIAL BLOOD GLUCOSE (PPG) The level of blood glucose measured 2 3 hours after eating. 14

16 NOVA HOLMBERG Nova has type 1 diabetes 15

17 VINCENT REVO LONDA Vincent has type 1 diabetes PRE-FILLED INSULIN PEN This type of pen comes with the insulin already in it. These pens are disposed of when the insulin has expired (30 56 days, depending on the type of insulin), or all the insulin has been used. PRE-MIXED INSULIN A mixture of a rapid-acting analogue or short-acting insulin and a long-acting analogue or medium/long-acting insulin with a peak action of 2 8 hours, usually injected before breakfast and evening meal. This kind of insulin is no longer recommended for general use in children. RAPID-ACTING ANALOGUE This type of insulin is fast-acting, with a peak action of approximately 1 2 hours after injection, and lasts for around 4 hours. It is typically given around mealtimes to help manage blood glucose levels. See bolus insulin. DURABLE INSULIN PENS This type of pen requires cartridges to be inserted. When all the doses are used, or the cartridge has expired, the cartridge is replaced. SHORT-ACTING INSULIN This is also sometimes called regular or neutral insulin and is usually taken minutes before a meal and lasts for around 6 8 hours, with peak action at around 2 4 hours after injection. See bolus insulin. TYPE 1 DIABETES This type of diabetes occurs when the body produces little or no insulin at all. It is an autoimmune disorder in which the body attacks the beta cells that make insulin in the pancreas. Type 1 diabetes is by far the most common form of diabetes in children. Type 1 diabetes used to be termed juvenile onset diabetes. TYPE 2 DIABETES This kind of diabetes accounts for over 90% of adults with diabetes. In contrast to type 1 diabetes, lifestyle factors (such as being overweight) are usually a factor. This type of diabetes occurs when the body is resistant to insulin and/or not enough insulin is being made by the beta cells to keep glucose levels normal. Children can develop type 2 diabetes but it is still rare in the UK. Type 2 diabetes used to be termed non-insulin-dependent diabetes. 16

18 Key things you need to learn/do following your child s diagnosis of type 1 diabetes: Please ensure that you feel confident in the following aspects of your child s diabetes and have informed the relevant people of your child s diagnosis. If you have any questions or concerns, speak to a member of your diabetes care team. ADMINISTERING INSULIN 4 BLOOD GLUCOSE MONITORING 4 MEAL PLANNING 4 Ensure you feel confident injecting your child with insulin, or programming their insulin pump, and know what dose is required and when. Ensure you feel confident using the blood glucose meter and know when to test and what the results mean. If you have a CGM, you will not have to do such frequent testing, but it is still necessary, particularly for managing low glucose levels. Ensure you understand how to balance food intake with insulin doses and understand carbohydrate counting. MANAGING LOW BLOOD GLUCOSE 4 CONTACTS 4 WHO TO TELL 4 You will need to ensure that you have a supply of high glycaemic index (rapid-acting) snacks or drinks with you, wherever you go, to help manage episodes of low blood glucose (hypos). A hypo box may be useful. Ensure you have , phone and text numbers for the diabetes team. Know who to contact in an emergency you (or your child) should make sure to have this information with you at all times. Ensure you inform anyone involved in your child s care about their diagnosis of type 1 diabetes: Nursery assistants Other caregivers School teachers Other members of your family Ensure your child carries identification, such as a card or bracelet, that informs people that they have diabetes. 17

19 Important information First appointment Date: Time: Doctor s name: Location: Contacts Doctor: Nurse: Tel: Tel: Insulin regimen Insulin/device: Timing of doses: 18

20 This information was developed by Novo Nordisk, a global healthcare company with more than 90 years of innovation and leadership in diabetes care. This heritage has given us experience and capabilities that also enable us to help people defeat other serious chronic conditions: haemophilia, growth disorders and obesity. Headquartered in Denmark, Novo Nordisk employs approximately 40,300 people in 75 countries and markets its products in more than 180 countries. For more information about Novo Nordisk, please visit Other materials from the With you all the way campaign can be accessed via This information is not designed to replace the advice of a healthcare professional. Please consult your diabetes care team if you have any questions or concerns about your child s diabetes. 19