Diabetes Handbook
Information for Children and Young People with Diabetes and their families
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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. Sessions arranged for school staff to attend for update teaching. • Regular tests to monitor for conditions associated with diabetes. • Linking with your GP to arrange repeat prescriptions for diabetes medications, and with any other organisations involved in your child’s care. • Access to psychology services. • Ward visits from the team should your child be admitted 10 to hospital during the week. From Schools you can expect • A clean, secure place to store diabetes equipment and administer blood tests and injections. • Volunteer school staff trained to administer blood glucose tests and injections as needed, or supervision of the procedures. • A care plan updated regularly to ensure consistent care. • An identified method of communication between home and school.
From Children and their Families we expect • To update the diabetes team with any changes to contact details e.g. telephone numbers. • To provide the school with diabetes equipment as needed and meet with school staff as required to discuss issues or update care plans. • To attend teaching sessions as arranged. • To attend diabetes clinic appointments. • To contact the team if you have concerns. • To contact the team in advance if you are planning to travel abroad.
Home Visits • The Diabetes Team will always try to offer home visit appointments at times convenient to you, however occasionally due to unforeseen circumstances we may need to reschedule visits at short notice. We will try and keep this to a minimum, and will contact you as soon as we can. 11 Clinic Visits • The Children’s Diabetes Clinic is a multi-disciplinary clinic which means doctors, nurses, dietitians and psychologists are present to monitor and discuss your child’s diabetes. • You will be offered a minimum of four appointments per year. • There will be times when you are not able to attend your appointment and we request that you contact the appointment service on 01563 827069/827070 to reschedule the appointment as soon as possible. • If you do not attend your appointment and you have not informed the team, your GP will be made aware of your non attendance. • A further appointment will be made for your child however it may be some weeks before the next appointment date. • If you have any queries with regards to your rescheduled appointment date, please contact the diabetes team. • Regular non attendances at clinic appointments are a concern to the diabetes team and require us to contact other professionals, including our social work colleagues. This would be discussed with you so we can work out a solution that helps you to link in with the diabetes team.
12 Contact Details The Children’s Diabetes Team are available from Monday until Saturday 9am – 5pm and can be contacted within these hours on the numbers below.
Diabetes Office University Hospital Crosshouse 01563 826010 University Hospital Ayr 01292 513363 If there is no one in, a message can be left and someone will return your call as soon as possible.
For more urgent advice affecting your child’s diabetes telephone ward 1A, 01563 827831 and ask to speak to the registrar on call.
Please continue to attend your family doctor (GP) for all other routine illness.
Dietitians University Hospital Crosshouse 01563 827141 University Hospital Ayr 01290 424736
In an emergency, always telephone 999.
13 Education Checklist Topic Date Sign Met Consultant Scottish Study Group consent Obtained Met Dietitian GP Prescription checked Outpatient Appointment made
Date Topic Mum Dad Child Other Review Sign/ Date initial What is Diabetes Causes Symptoms Explanation of Honeymoon Period Insulin Different types of insulin, action and duration of action Changing pen cartridges Dosages Use of Correction Doses Storage Leaflets Injections Technique (how to do) 14 Date Topic Mum Dad Child Other Review Sign/ Date initial Sites/rotation Pen/Pump device Disposal of sharps What to do if an injection is forgotten Blood Glucose Monitoring How often and when Technique (how to do) Normal range Blood Glucose Diary When and how to seek advice Meter Type: Meter Maintenance Hypoglycaemia (hypo) What is Hypoglycaemia Causes/symptoms/ prevention Management including use of glucose tablets, glucogel etc Glucagon
15 Date Topic Mum Dad Child Other Review Sign/ Date initial Hyperglycaemia What is Hyperglycaemia Causes/Symptoms/ prevention Management Ketone Testing Why, how and when to test Interpretation of results and actions to take When and how to seek advice Illness Management Sick Day rules and Diabetic Ketoacidosis prevention 24hr telephone contact numbers Complications Prescriptions What is available on the NHS Identification Medical Alert/ Diabetes Card Disability Living Allowance 16 Date Topic Mum Dad Child Other Review Sign/ Date initial School School Care Plan Equipment for school including hypoglycaemia treatment Exercise/PE Lessons Expectation of Clinic Attendance Support Services including Diabetes UK and JDRF
17 Food and Diabetes
Food is a very important part of diabetes care. A healthy food intake is good for everyone, especially for people with diabetes. There is no need to buy special “diabetic” foods or products. Your child and the family may have to make small changes to the foods they usually eat. Here are some guidelines you should follow: • Eat regular meals and snacks • Include a starchy food at each meal • Avoid too many sugary, sweet foods and drinks • Choose higher fibre foods • Include a variety of fruit and vegetables • Cut down on fat and fatty foods • Be careful not to eat too much salt • Try to have a balanced diet The Eatwell guide shows the balance of the different food groups your child should have.
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19 There are three main food groups: • Carbohydrate: for example, bread, cereal, pasta and rice • Protein: for example, chicken, red meat, fish and pulses • Fat: for example, butter, margarine, oil and cream
Carbohydrate Carbohydrates are a combination of starch and sugars. All carbohydrate foods are broken down into glucose and are absorbed into the bloodstream (used by the body) at different rates. Consequently they have different effects on blood glucose levels. It is best if we get most of our energy from high fibre, starchy carbohydrates as the glucose from these foods is released more slowly. The dietitians will work with you to calculate the carbohydrate content of the foods and drinks your child eats. When you are ready we will move on to teaching you how to adjust the insulin dose your child needs for the carbohydrate they consume (this is known as carbohydrate counting).
Good sources of starchy carbohydrate foods include: • Breakfast cereals e.g : Weetabix, cornflakes, Branflakes, Shreddies, Rice Krispies • Porridge or Ready Brek • Wholemeal or Seeded Breads • Wholemeal Pasta • Wholemeal Rice • Chapatti 20 • Potatoes • Sweet Potato • Wholegrain Crackers • Oat based biscuits
Sources of sugary carbohydrate include: • Sweet breakfast cereals e.g. Frosties, coco pops, ricicles • Sweets • Chocolate • Chocolate-coated biscuits • Sweet biscuits • Sweet cakes and pastries • Desserts such as mousses, ice cream • Milkshakes, Fruit smoothies Sugary carbohydrate foods should only be eaten in moderation and with meals because glucose is released from these foods more quickly than starchy foods and will cause a quicker rise in blood glucose.
Other carbohydrate foods Fruit: Fruit is an essential source of vitamins, minerals and fibre. Fruit contains fructose, which is a natural sugar and will raise blood glucose levels, however it also contains fibre which will slow down the release of the natural sugar from the fruit. Fruit can be taken with meals or a small portion as a snack. Fruit juice should only be taken in small amounts with a meal (a portion is 150ml). It does not contain any fibre so will give a quick rise in blood glucose. 21 Milk: Milk and milk products contain a natural sugar called lactose which is a slowly released carbohydrate. Milk is an important source of energy, protein and calcium for growing children.
Fibre High fibre starchy foods are important for general health and also help control blood glucose levels. It is best to increase your childs fibre intake gradually so that their body gets used to having more high fibre foods. It is also important to make sure that your child drinks enough fluid. To increase fibre intake, choose higher-fibre alternatives: Ordinary Food High Fibre Alternative White bread Wholemeal, Granary and soft grain bread White pasta/crackers Brown or wholegrain rice Cream Crackers Wholegrain crackers, oatcakes, rye crispbreads Corn Flakes, Rice Krispies Weetabix, Oat cereals, porridge, branflakes Mashed Potato Baked Potato – try to eat the skin too Pure Orange Juice Whole oranges, satsumas
Protein Foods Proteins are used for growth and repair in the body. Your child should eat some protein foods every day. Eat two to three portions every day – for example, lean meat, chicken, turkey, fish, cheese, eggs, beans, lentils, soya, nuts. 22 Fat Although fat does not cause a rise in blood glucose, choosing lower fat foods is important for general health and to avoid excessive weight gain. The following foods are high in fat and should be limited: • Fried foods • Butter, margarine, oil, lard • Fatty meats and meat products – for example, burgers, sausages, pies and sausage rolls Ways to reduce fat: • Grill, poach or stew food instead of frying • Choose chicken (without the skin) and fish instead of fatty meats • Have lean meat – cut off the fat from the edges • Spread butter/margarine thinly or use low fat spread • Use semi-skimmed milk (full fat milk for children under 2 years old) • Eat a maximum of one packet of crisps a day
Sweeteners Sweeteners fall into 2 main categories: • Nutritive Sweeteners e.g. soribitol, mannitol, sugar alcohols/polyols. These are used in some food and drink products for example, ‘diabetic’ foods. They are not recommended as they are poorly absorbed by the body and can have some unpleasant side effects. They also cause a rise in blood glucose levels.
23 • Non-Nutritive sweeteners for example, saccharin, aspartame, acesulfame K. These are widely used as a sugar substitute in food and drinks and do not cause a rise in blood glucose levels.
Fluid • It is important for children with diabetes and their general health, to drink plenty of fluids – ideally water should be given. If your child does not like water, sugar free diluting juice can be used. • Diet fizzy drinks do not cause a rise in blood glucose levels however they are very acidic and therefore damaging to their teeth.
Carbohydrate counting The Dietitian will provide you with set amounts of carbohydrate to aim for at mealtimes following discharge from hospital. Shortly after this we will teach you carbohydrate counting where you learn to read food labels and measure your food to calculate the carbohydrate content of the foods your child eats. The next step is learning how to adjust the insulin dose your child gets at mealtimes to the amount of carbohydrate they eat – this is called using Insulin to Carbohydrate Ratios.
Snacks Snacks between meals are not essential. However younger children may need them to make sure they have enough energy. 24 It is recommended that snacks are kept to less than 15g of carbohydrate (carbs). This is because there may not be enough insulin to cover this extra carbohydrate. If a larger snack is eaten, extra insulin may be required to avoid high blood glucose levels. Here are some examples, however there are plenty more options, just check the labels for the ‘total carbohydrate’. When it comes to snacks it can also be useful to check the sugar content to see how healthy a food is. Look for the “Carbohydrates (of which sugars)” figure in the nutrition label to see how much sugar the product contains for every 100g: • more than 22.5g of total sugars per 100g is high • 5g of total sugars or less per 100g is low If the amount of sugars per 100g is between these figures, that’s a medium level of sugars. Fruit Portion Carbs Banana 1 small 15g Apple/orange/pear 1 medium 15g Clementines/satsuma 2 peeled 12g Raisins 15g box 10g Dried apricots 30g (approx 4) 14g Plums 2 small (50g each) 10g Pineapple 1 slice (100g) 10g Kiwi 1 (80g) 9g Melon 1 slice (200g) 12g Raspberries 25 (75g) 5g Strawberries 10 medium (100g) 6g Cherry tomato 6 4g Grapes 10 medium 10g 25 Fruit is a healthy snack which is low in calories, high in fibre and rich in vitamins and minerals. Try to include at least five portions of fruit and vegetables a day. Remember fruit and some vegetables have carbohydrate in them. Make fruit and vegetables more appealing to young children by making it fun e.g. making fruit kebabs or adding your own yogurt topping.
Yoghurts/fromage frais Yoghurts and fromage frais can make a nutritious snack. Check the food label to make sure there is less than 15g of total carbohydrate in a pot. Yogurt can be frozen to make an ice-cream like snack. Crisps Portion Carbs Quavers/Monster Munch 20g/25g 13g Wotsits 18g 10g Tesco/Asda/Sainsburys/Walkers 25g 15g Hula Hoops 25g 15g Pringles 15 (25g) 12g Crisps can be high in fat and salt so try to restrict these to a maximum of one packet a day. Rice cakes Portion Carbs Snack-a-jacks (unsweetened) 1 jumbo 8g Rice cake 1 (8g) 6g Try to choose plain rice cakes as often the flavoured varieties are high in salt.
26 Cereal bars Portion Carbs Alpen light bars 1 11-14g Belvita breakfast biscuit 1 9g Tesco healthy living 1 10g Asda good and counted 1 14g 9 Bar 1 11-15g
Biscuits/cakes Portion Carbs Richtea/ginger biscuit 1 6g Hobnob/digestive 1 9g Crackers 1 5g Oatcakes 1 6g Scotch pancake 1 small 12g Breadstick 1 15g Popcorn (plain) 20g 10g Cereal bars can be a healthy snack but can also be high in sugar. If you are having this as a snack remember to check the label to make sure there is less that 15g carbohydrate in a bar. Miscellaneous Almond nuts* 25g 2g Cashew Nuts* 25g 5g Peanuts* 25g 3g Bread/Toast 1 slice 15g Hummous ¼ pot (50g) 4g Branflakes 20g 13g Low Sugar Multigrain hoops 20g 13g * Don’t give whole nuts to children under 5 years of age due to the choking hazard.
27 Carb Free/ Low carb foods If your child has recently been diagnosed with diabetes they may be more hungry than usual, this will settle down. Try to fill them up at mealtimes to avoid excessive snacking. Use foods which are lower or free from carbohydrate to help fill them up. Some of these foods are: • Meat • Fish • Cheese • Eggs • Vegetable sticks e.g. cucumber/carrot/peppers/ mangetout – dip these into hummus/sour cream or avocado dip • Sugar free jelly • Sugar free ice poles or make your own sugar free ice lollies using moulds Serve the above foods with something carb based to make a more filling snack to keep them full between meals.
28 Exercise and Diabetes Exercise is important for all children. There is no exercise that a child with diabetes cannot do. Exercise can include planned activity for example, physical education (PE). in school and unplanned activity such as football in the garden.
How much exercise should my child be doing?
Under 5’s More than three hours each day 5-18 years More than one hour each day 18 years and over More than 150min each week Some planning for activity is needed. Children with diabetes can experience low or high blood glucose when they exercise. Hypos can occur during or after exercise, when the body has used up much of its stored sugar (glycogen). This can happen if insulin levels in the body are still high. High blood glucose levels may occur because the muscles need more energy during exercise, so the body responds by releasing extra glucose into the blood. If the body doesn’t have enough insulin to move the glucose, then the glucose will stay in the blood. Each child responds differently to increased levels of activity or exercise. To help understand what happens to your own child, check their blood glucose before, during and after exercise.
29 Ways to manage activity will be discussed in detail with the team and may require extra carbohydrate, less insulin or a combination of these. A basic guide is detailed below: Blood Glucose level Action before activity Below 4mmol/l Treat hypo and delay exercise 4-6 Take extra carbohydrate – the amount will depend on type and duration of activity 6-14 Extra carbohydrate may be required depending on the type and duration of activity Over 14mmol/l Check for ketones* *Check for ketones if your blood glucose readings are more than 14mmol. The presence of ketones in someone with diabetes, combined with high blood glucoses, shows a lack of insulin and the need for more insulin. Exercise at this time will only burn more fat for energy and produce more ketones. We recommend that you start by taking 10g of extra carbohydrate for every 30 minutes of exercise. Only by reviewing your Blood glucose levels before and after exercise will you find out what you really need.
30 Diabetes Equipment and Medication You will need different pieces of equipment to look after your child’s diabetes. You will not need to use all the equipment every day, but it may be needed during times of illness, so it is important that it is always available. When you and your child are discharged you will be given enough equipment for a few days. The Diabetes Team will write to your GP and you will obtain further supplies from there. Please contact your health centre to check how repeat prescriptions should be obtained. If your child has more than one home it may be necessary to ensure that both homes have the equipment. Don’t forget to check the expiry dates regularly. Equipment and medicines to keep at home: • Insulin cartridges and/or disposable insulin pens • Reusable insulin pens e.g. Novo pen Echo • Insulin pen needles • Box of lancets/lancet barrels • Blood glucose testing strips • Blood ketone test strips • Glucogel • Glucogen injection kit • Sharps container Equipment not available on prescription These items will be provided by the diabetes team: • Blood glucose testing meter • A finger pricking device (lancer) 31 Please do not change your insulin delivery device (pen) or blood glucose monitoring equipment without discussing this with the diabetes team. If you require a spare or a replacement blood glucose meter, the diabetes team have supplies.
Storage and disposal of the equipment
Insulin: • Insulin comes in boxes of five 3ml cartridges or boxes of 5 disposable pens. • The unused cartridges/pens should be stored in the fridge away from frozen foods and the freezer compartment. The shelves in the fridge door are an ideal place. When stored this way the insulin can be kept until the expiry date. • Once a cartridge or pen is opened it should be kept at room temperature (be careful to avoid it becoming very hot or cold by leaving it on a window sill, or by the fire). Once opened, an insulin cartridge should be used for one month only. • Used cartridges should be disposed of in the sharps container. • There are a number of insulin types and devices for giving the insulin. Your nurse will discuss with you the system that is best for your child.
Pen needles and lancets: • A new pen needle or lancet should be used each time you do a blood test or give an injection. 32 • Pens should be stored without a needle attached to prevent accidental injury. • The needles and lancets should be stored in a cupboard at room temperature, away from any sources of moisture which could affect the sterility. • Needles and lancets must be disposed of in a sharps container
Blood testing strips: Strips should be stored at room temperature. They should be kept in their original container. Used test strips can be wrapped in tissue and disposed of in the domestic waste.
Blood Ketone test Strips Blood ketone strips should be stored at room temperature, and used strips can be disposed of in the domestic waste.
Glucogel gel Can be kept at room temperature, but is often kept in the fridge for easy access. It is also useful to keep some in school, and in the glove box of your car. If used the tube can be disposed of in the domestic waste.
Glucagon (Glucagon Kit) Glucagon should be kept in the fridge. Avoid the freezer section or frozen foods. The shelves in the fridge door are an ideal storage space. If used the glucagon kit should be
33 disposed of in the sharps container. If taken out of the fridge at any time, glucagon will expire 18 months from the date of issue.
Sharps Container The sharps containers are brightly coloured, and so are attractive to young children whose hands are small enough to reach inside, risking injury. To reduce this risk ensure it is stored out of their reach. There is a black line on the label; the box should not be filled above this line. When filled the lid should be permanently sealed and returned to the pharmacy.
Blood Glucose Testing Blood glucose testing enables the blood glucose levels to be monitored which indicates how effective the diabetes is being controlled. Your diabetes nurse will show you how to use your blood glucose meter and will provide new meters as needed. Blood glucose levels should be checked at different times of the day: • Before main meals – before breakfast, before the mid- day meal and before the evening meal • Initially 2 hours after meals • Bedtime or before supper • If hypoglycaemia is suspected Other times to perform checks will be discussed with you and your child. 34 Children should be encouraged to help with their blood glucose tests as much as possible and many children are able to do their own test under supervision by the age of 7 years old. Tips for blood glucose testing: 1. Do not use lots of different glucose meters. Results will vary slightly from meter to meter. Too many meters can be unreliable. 2. Always use a new lancet for every test 3. Always wash hands with soap and warm water and check fingers are dry 4. Don’t use alcohol gel or alcohol wipes as the chemicals in them will affect the results 5. Use the sides of the fingers not the pad 6. Rotate – (change) fingers. If the same finger is used hard skin can develop and affect the results 7. Never let anyone else use the meter or lancing device 8. Check the date and time are set correctly – especially when the clocks change in Spring and Autumn
How to look after your blood glucose meter 1. Write the results down. 2. Keep the instructions book to help set the meter and understand error codes. 3. Ensure a spare supply of batteries
35 4. Check the meter with test solution when starting a new box of strips or if you suspect the meter is not giving accurate results. Contact the company or diabetes team if you have any problems.
Meter Company Helplines Abbott – 0500 467466 Bayer – 01635 563000 Roche – 0800 731 2291
Continuous blood glucose monitoring (CGMS) Occasionally, blood glucose levels in children and young people can be erratic and trends or patterns cannot be seen. If this occurs the Diabetes Team may suggest using continuous blood glucose monitoring (CGMS). This includes putting in a small cannula (tube) under the skin using an anaesthetic cream and inserter. The needle is then removed leaving only a soft tube under the skin. The device records glucose levels every few minutes which provides us with lots of valuable information. The device is used for up to 6 days at a time. Your child should do all their usual activities and eat their usual foods. Blood glucose levels will continue to be recorded 4 times a day and a food and activity diary will need to be completed. The information can be used to identify any changes required to the management of your child’s diabetes.
36 Insulin Injections Insulin injections are often people’s biggest fear when diabetes is diagnosed.
This section will explain: • Why insulin injections are needed • Insulin types and actions • How to do insulin injections • How to solve problems
Why does insulin need to be given by injection? When someone develops Type 1 diabetes their body is no longer able to produce insulin in the pancreas, as it did before. Without insulin people with Type 1 diabetes will die. Insulin has to be replaced to maintain health, but it cannot be taken as a tablet. This is because insulin is made of protein (like meat or fish) and if it was swallowed it would be digested in the stomach before it could be absorbed into the blood.
How does the body control blood glucose in normal health? When we eat foods that contain carbohydrate our stomach and intestine digests the carbohydrate to glucose. Glucose is absorbed into the blood stream and the blood glucose level rises. The pancreas produces insulin which transports the glucose into cells to be used as a source of energy. Any 37 remaining glucose is stored in the liver as glycogen, or once these stores are full it is stored as fat. When we do not eat (fast) the level of glucose in the blood starts to fall. The pancreas reduces the amount of insulin and produces another hormone called glucagon which releases the glucose from the liver. When these stores are used the body starts to break down the fat stores which can be converted to glucose. Because of these two processes the body can keep the blood glucose levels very stable.
How is the blood glucose level controlled in Type 1 diabetes? The most common insulin regimen is ‘Multiple daily injections’ (MDI), often called Basal Bolus. This involves the use of 2 types of insulin: 1. LANTUS also called insulin glargine or LEVEMIR also called insulin determir. This insulin is usually given once daily and lasts for 18-24 hours so must be given at the same time every day. It stops the body releasing too much glucose back into the blood stream between meals and at night. 2. NOVORAPID also called Insulin Aspart. This insulin is given with meals and snacks and lasts for 3-4 hours. The number of injections needed depends on the number of meals and snacks eaten. It transports the glucose from the food into the cell. Novorapid works best if given before food but in some circumstances it can be given after food.
38 In some situations a different type of insulin using pre mixed long and short acting insulin is used. The diabetes team will discuss this with you if your child needs this type of insulin treatment.
The Honeymoon or Partial Remission Phase • When diabetes is diagnosed about 80% of the insulin producing cells (islets) have been destroyed. • Shortly after diagnosis, and once insulin injections have been started, the remaining 20% of islets are able to produce some insulin before they too are destroyed. This period can go on for some months and means that the insulin doses can sometimes be lowered, but the diabetes does not go away. • As the remaining islet cells are destroyed the honeymoon phase ends and larger insulin doses will gradually be needed to allow for this. This does not mean the diabetes is getting worse.
How to do an injection The age when a child starts to give their own injection varies, but most children should usually be able to give their own injections by the age of 9 years. Doing your first injection, either for yourself or your child, is nerve wracking, but it does get easier. Injections are given into the layer of fat just below the surface of the skin. The areas of the body that have enough fat for this are the tummy, buttocks, the front and outer side of the thighs, and sometimes the upper arms. 39 Insulin is measured in ‘units’. The pens used will give insulin in half or whole unit doses. The team will show you how the pen works. Your Diabetes Nurse will show you how to do the injection, and it is worth practicing on test equipment to get the ‘feel’ of doing an injection.
How to inject • Check the correct insulin type and expiry date • Check there is enough insulin in the cartridge to give the dose • Put a new needle onto the pen • Do an ‘air shot’ by dialling up 2 units and, holding the pen vertically, needle pointing upwards, squirting it out. If no insulin appears, repeat the air shot again until the insulin does appear. Never given the injection if the air shot has not been done because you may not deliver the full amount of insulin. • Do not blow or dab the drop of insulin from the needle, as this could mean the needle is no longer sterile (clean). • Dial up the correct number of units of insulin. • Give the injection as you have been shown. Wait for 10 seconds (count to 10 slowly) before you remove the needle. This gives the insulin a chance to get into a fatty layer. You do not have to rub the site. • Remove the needle and dispose of it into the ‘sharps’ container. Pens should be stored without a needle for safety purposes. 40 Occasionally when you give an injection a drop of blood or a small bruise appears. This does not mean the injection has been done incorrectly. A small blood vessel has burst, but the insulin will still work properly. Most bruising is not sore and will go away within a day or two.
Rotating (Moving Sites) Insulin can be given into the tummy, buttocks, legs and sometimes upper arms. If the Levemir/Lantus and Novorapid are given at the same time of day they MUST be given in sites at least 10cm apart, preferably in different parts of the body for example, Levemir/Lantus in the right leg and Novorapid in the left leg. Children often use their tummy at school at lunchtime. Buttocks are used mainly in very young children as another person needs to give the injection. Legs can be used at any time of the day, but care should be taken if the child is going to participate in sport in the next 2-3hours after the Novorapid injection. Spacing out the injection sites prevents lipohypertrophy – see below. Make sure that the injections are given at least 3cm ( 2 - 3 fingers widths) apart. 3cm –
41 Lipohypertrophy (lumpy sites) • If the injections are given too closely together and/or the needles are reused the sites can become lumpy. This is called Lipohypertrophy. • This means a thickening of the injection sites due to the body laying down an ‘extra layer’ of fat at the injection site. • Lumps are unsightly, but more importantly they affect the way insulin works. Absorption becomes erratic and blood glucose results may be difficult to stabilise. Children usually inject into these areas because the injections are less uncomfortable. • Check injection sites regularly at home by running two flat fingers firmly around the areas you or your child injects into. If the skin feels very firm, or looks lumpy or shiny, move to a healthy area of skin. • About 20-25% of people have this problem at some time, but just moving injection sites can lead to better control of your child’s diabetes. • If the sites have been very ‘lumpy’ moving to a healthy site may require a reduction in insulin dose– discuss this with your diabetes team. • The only ‘treatment’ for lipohypertrophy is to stop injecting in that area. The body will reabsorb the tissue, but this will take time, usually between 1 - 6 months.
42 Tips to encourage your child with the injection • Show confidence, even if you don’t feel it! • Encourage your child to breathe deeply to help relax • If your child is having difficulties with injections, use an ice cube (or a bag of frozen peas) to numb the injection site (it diverts attention too!) • If using the leg, encourage your child to wiggle their toes to relax the muscle • It is important, even if your child can give their own injection, that at least one adult at home can give injections. When children are unwell they may not feel up to giving them themselves and will need an adult to give them instead. • If your child was very young when they were diagnosed they may be very nervous about starting to do their own injections. Try using the chart below to build up to it gradually. Complete these steps in whichever order suits you and your child. • Children should be encouraged to participate in their injections as soon as they can, but should be able to give them by the age of 9 years old. • If you are experiencing problems talk with the team who may be able to offer further advice.
43 Steps to doing your own injection • Child can watch the injection being given • Child can put a new needle on the pen • Child can do the ‘air shot’ • Child can dial up the insulin dose • Child can pinch up the skin for parent to do the injection • Child can put their hand on the parent’s whilst they give the injection • Parent to give the injection and child to push the plunger down • Child can hold the pen and parent guide the injection • Child can take the needle out of leg • Child disposes of the needle in the ‘sharps’ container • Child can do all the above stages
Well done!
44 Insulin pump therapy Once established with insulin injections the option of moving onto insulin pump therapy may be discussed. An insulin pump uses only quick acting insulin which is delivered continuously by a small tube instead of multiple daily injections. It is a small device about the size of a mobile phone and can be clipped to a belt or worn under clothing. The infusion set inserted under the skin is just like an injection and connects to the insulin reservoir contained within the insulin pump and is replaced every couple of days. This allows very small and subtle changes to the dose to be delivered and all carbohydrate should be covered with insulin by giving a bolus dose at the touch of a button. The pump is programmed to deliver a background rate, individual insulin to carbohydrate ratios and insulin sensitivity and can be customised with specific targets. The background or hourly rate of insulin can also be easily altered on a temporary basis to accommodate changed insulin requirements for peaks of activity and illness. The pump requires regular blood glucose testing, along with accurate carbohydrate counting to deliver a bolus of insulin to maintain steady blood glucose levels. An enhanced level of understanding and motivation is required for pump therapy to be safe and effective and there is a comprehensive education programme in place to support this goal.
45 Hypoglycaemia The aim of diabetes treatment is to keep the blood glucose levels as near normal range as possible, however sometimes the level falls too low. Hypoglycaemia is commonly known as having a ‘hypo’. This is when blood glucose levels fall below 4mmols, with or without symptoms.
Why do hypos happen? Hypo’s happen because of an imbalance between food, insulin and exercise. Common reasons are listed below: • Not eating enough carbohydrate when the fast acting insulin dose is injected • If the dose of long acting insulin is too high • Doing an activity e.g. sport, without having extra carbohydrate • Taking the wrong type of insulin • Illness (e.g. diarrhoea and vomiting) • A change in injection sites from the area of ‘lumpy’ skin (lipohypertrophy) to healthy skin • If the long acting and short acting insulin are injected in sites too close together (they must be at least 10 cm apart, best in different limbs) • Alcohol/Drug misuse • Hot weather • Stress/excitement
46 If a hypo happens, think if the day was different from usual and try to find a reason, although sometimes, it is not possible to find the cause.
What does a hypo feel like? • Most people will know when they are having a hypo. • Although the symptoms (signs) are different for each person, the signs for your child will be similar each time a hypo occurs. • Symptoms: Shaky Lethargy Sweaty/Clammy Confusion Hungry Nausea Mood Changes Blurred Vision Headache Slurred Speech Pale Reduced Co-ordination You and your child will learn to recognise their symptoms the more you learn about their diabetes.
What should you do if you suspect a hypo? • Check the blood glucose level before treating a suspected hypo. If blood glucose is above 4mmols/l it is not a hypo, so no treatment is required. You may wish to repeat the blood glucose again 10-15 minutes later if you suspect the blood glucose level is falling. • Hypos can happen anywhere, it is essential to have hypo treatment with you at all times and to encourage your child to carry it too as soon as they are old enough.
47 • Try to ensure your child is not left alone until a hypo is fully corrected. • If you do not have a meter available it is safer to treat the symptoms. Occasionally some children may not recognise their symptoms (hypo unawareness) or may be too young to explain how they feel. These circumstances need individual management – if you feel this is happening to your child discuss options with the Diabetes Team.
48 Treatment of Mild or Moderate Hypoglycaemia
1 Follow this box if your child is 2 Follow this box if your child refuses co-operative and able to tolerate to drink, is uncooperative, but is oral fluids. conscious. Give 10-15 g of fast acting oral Give Glucose gel. This is a fast-acting carbohydrate, such as sugary gel in an easy twist top tube. Each tube contains 10g of glucose. 3-5 glucose tablets Squirt tube contents gradually in 100-150ml sugary drink (not diet) the side of each cheek evenly and such as cola massage the side of the cheek 2-3 Jelly babies enabling glucose to be swallowed and absorbed quickly. Chocolate or milk WILL NOT bring glucose levels up quickly enough. DO NOT use glucose gel in an unconscious or fitting child. Wait 10 - 15 minutes then recheck blood glucose: If blood glucose level still When blood glucose level >4mmol/L: <4mmol/L: Give 10 – 15g slow acting carbohydrate (or • If able to tolerate oral fluids normal meal or snack if it is due) such as: repeat from Step 1. • One plain digestive • If refusing to take oral fluids but • Two rich tea biscuits conscious repeat from Step 2. • One slice of toast • Glass of milk (200ml) • One piece of fresh fruit If hypo is just before a meal time (when insulin is usually given) the hypo should be treated first and once the blood glucose is >4.0mmol/L, the insulin should be given as usual. DO NOT OMIT INSULIN, but consider giving after meal. Review history of hypo: If possible the cause should be identified and if necessary the insulin dose adjusted. 49 Hypo treatment examples 10g Carbohydrate 15g Carbohydrate Lucozade (original) 110ml 170ml Glucotabs 3 4 Dextrose Tablets 3 5 Fruit Juice 100ml 150ml Cola 100ml 150ml Jelly Babies 2 3 Jelly Beans (regular) 5 7
Severe Hypoglycaemia Severe hypos are very frightening, but usually rare. If the falling blood glucose is not recognised, or falls so rapidly it is not possible to take action, a severe hypo will result.
What happens in a severe hypo? The blood glucose level falls so low that the person becomes extremely uncooperative, semi-conscious or unconscious. They might also have a short ‘fit’ which would mean that all limbs are shaking, and they might make crying or grunting sounds. • If your child is having a fit do not move them. Move anything away from them that they might hurt themselves on eg furniture • Put your child in the recovery position
50 • Do not place anything in your child’s mouth as this may cause choking • Give the Glucagen injection (the orange kit) into the upper, outer thigh muscle • Call 999 -- The ambulance staff are trained in administering glucagon -- The ambulance staff will assess your child and you may not have to come to hospital.
What is Glucogen? Glucogen is the brand name for the hormone glucagon. It is not a glucose injection. It is the hormone that has the opposite effect to insulin – it releases glucose from the liver raising the blood glucose level. Your nurse will explain how to use the glucagon kit. • Give 0.5mg (½ml) for children under 8 years old • Give 1mg (1ml) for children over 8 years old If you make up the glucagon kit, but do not use it, you must replace it with a new one as soon as possible.
• Once your child starts to come round give small doses of sugary drink or Glucose gel • Glucagen can cause nausea and vomiting. If your child feels sick wait a few minutes then offer sips of sugary fluids. • Once your child is fully awake and blood glucose is above 4mmol/l give some slow acting carbohydrate 51 for example, bread or biscuits. They will feel unwell and will be reluctant to eat so may need encouragement. It is important that slow acting carbohydrates are taken because the effect of the Glucagon injection only lasts for a short time. • Your child will probably want to sleep for a short time after the severe hypo. Check a blood glucose level, taking care to check that any sugar or Glucose gel has been cleaned from your hands. • Blood tests should be done hourly for a few hours after the hypo. • The result will usually be high – this should not cause concern – it is a normal rebound reaction – don’t give a correction dose of insulin.
If a severe hypo happens please contact the Diabetes Service.
NEVER STOP THE INSULIN DOSES.
52 Severe ‘Hypo’ Typical Signs Losing Consciousness/Unconscious/Seizure 1. Ensure the child is safe, for example – clear surrounding area of objects. 2. Check that the child’s airway is clear. 3. When able, place in the recovery position.
1. Give Glucagon injection (the orange kit) into the upper outer thigh muscle. 2. Ring 999 and ask for an ambulance. Once conscious 1. Offer small amounts of sugary drink or Glucose gel. 2. Do not allow the child to sleep until starchy carbohydrates have been tolerated, for example – bread, biscuit. 3. Check blood glucose levels are maintained over 4mmol/l. Never Omit the Following Insulin Dose Contact the Diabetes Team Monday to Saturday 9am – 5pm 01563 826010 Out of office hours contact The Children’s Assessment Unit 01563 827831 53 Worried about hypos during the night? • Remember that the body stores glucose in the liver which can be released slowly during the night. Even if a person with diabetes does not waken with a hypo, the body will release stored glucose to treat the hypo. • It is extremely unlikely that your child will come to any harm following a night time hypo. • Symptoms can include nightmares, night time sweats, headache in the morning and tiredness on wakening • Alcohol consumption and street drugs can cause significant hypoglycaemia-this will be addressed at the transition clinic.
The best way to avoid hypos at night is to: • Check a blood glucose reading at bed time. This should be in the normal target range • If you suspect your child is having overnight hypos it can be useful to check a blood glucose level at 3am and discuss with the diabetes team. • Be especially aware if your child is unwell. • If your child has had a very active day, more testing may be required as their energy stores may have been used up and will not be available to be released during the night - discuss with your diabetes team.
54 Rebound Phenomenon If your child’s blood glucose has been low during the night and this has gone unnoticed and untreated, stress hormones are released and can cause a higher blood glucose on wakening. If this is suspected it would be important to check some blood glucose readings during the night (e.g. 00:00hrs, 03:00hrs and 06:00hrs) to identify if this is the cause.
What if hypos happen at school? Teachers and first aiders at school may have had a visit from your diabetes nurse specialist to explain how to look after a hypo but it is often useful to go and see the teachers to check if they have any questions. • Your child will have a school care plan which will include information on hypos • Prepare a hypo kit for school If your child is in primary school the hypo kit can be kept in the classroom. In secondary school, keep the hypo treatment with your child and a spare kit can be left in the office or first aid room.
55 Sick Day Guidance
The next few pages outline what to do on days when your child is unwell, referred to as “Sick Days”.
Important points: • Illness may cause high or low blood glucose levels: • Fever usually causes high blood glucose levels. • Gastroenteritis (diarrhoea and vomiting) can cause low blood glucose levels. Treat the illness. Your child’s illness must be diagnosed and treated in the same way as a child who doesn’t have diabetes. Contact your family doctor (GP) if concerned. State that your child has diabetes and request a same day or urgent appointment. Vomiting may be caused by a lack of insulin. Make sure you check your child’s blood glucose and blood ketones.
What are ketones? Ketones are released into the blood stream when the body starts to use fat tissue as its energy source. The body will do this when: 1. It cannot get energy from food e.g. fasting or vomiting – these are called ‘starvation ketones’ 2. There is not enough insulin to transport the glucose into the cells. If left untreated this will lead to ‘diabetic ketoacidosis’.
56 Ketones should be checked for during any illness using a blood ketone meter. If left untreated ketones will cause diabetic ketoacidosis. If any of the following symptoms are present you must seek medical advice urgently: • Persistent vomiting • Dry mouth and passing less urine • Abdominal pain • Drowsy unresponsive child • Strong smell of ‘pear drops’ on the breath • Deep panting breathing Your child could become very sick with diabetic ketoacidosis (DKA) if high blood glucose levels are not treated.
What do I need for sick days? 1. Rapid acting insulin – for example Novorapid or Humalog. You may need extra doses of rapid acting insulin to get your child’s blood glucose down from a high level. 2. Blood ketone meter – Make sure you know how to use it and that you always have spare strips. 3. Hypoglycaemia remedy – For example, glucogel, glucose tablets, Lucozade.
57 When your child is unwell, please refer to these six “Sick day rules” Rule 1: Monitor your child’s blood glucose level. Check the blood glucose level more often: every hour, if necessary. Rule 2: Test for ketones. Check for ketones if the blood glucose is above 14mmol/l (up to every 2 hours). Levels above 0.6mmol/l can mean that the diabetes is getting out of control. If in doubt, phone us for advice. Rule 3: Drink plenty. Encourage your child to drink more fluids. High blood glucose readings lead to dehydration as a result of passing more urine. Extra fluids help clear ketones. Try to get your child to drink 1/2 to one cup of fluid per hour in small amounts (avoid carbonated drinks). a. If blood glucose is more than 7mmol/l, drink sugar-free drinks or water. b. If blood glucose is less than 7mmol/l, also drink liquids containing carbohydrates (milk or sugary juice). Rule 4: Keep taking carbohydrates. Try to make sure your child eats as normal a diet as possible. Telephone us for advice if you are finding this difficult.
What if my child has a poor appetite? Try offering small and frequent snacks of food and drinks containing carbohydrates and keep monitoring your child’s blood glucose.
58 What if my child is refusing to eat? If your child can drink, give them frequent sips of sugary drinks and keep watching their blood glucose.
What if my child is vomiting? Remember this may be a symptom of DKA so be sure to check your child’s ketones if blood glucose is above 14mmol/l. Your child may need extra insulin. If their glucose level is less than 4 and you can’t get your child to eat anything you will need to go to hospital. Rule 5: Never stop insulin completely. Usually extra insulin is required. Some insulin is always required to ‘switch off’ ketones, however, if your child’s blood glucose levels are low, less insulin may be needed. If a meal is missed and no carbohydrates are taken, then no fast acting insulin will be required at that point if the blood glucose is in the target range. If in doubt, call us for help.
When should my child get their insulin and how much insulin? Use the table on the next page. Give your child their insulin at the usual times. Your child may also need to have extra doses of rapid acting insulin at other times depending on the blood glucose level. The best way to know how much insulin is needed is to keep records from a previous similar illness and to know what insulin dose worked then. You may need to give your child another rapid insulin dose later, but wait for at least three hours before doing this.
59 What to do with glucose and ketone results on sick days (Check every 2 hours while unwell) Blood Ketones What to do Glucose on (mmol/l) blood test (mmol/l) Less Treat as a HYPO. Once blood glucose greater than than 4mmol/L, give insulin as above. If 4mmol/L unsure, phone for advice. Between Do not give extra insulin. If your child has a 4 and vomiting and/or diarrhoeal illness, they may 7mmol/l need a reduction in the normal insulin dose (in target to be given. If unsure, phone for advice. range) Between Give the usual doses of insulin you are 7 and 14 familiar with using on a day to day basis. mmol/l Remember to give a correction dose in the usual way. More Below Give a Correction dose of rapid acting insulin than 14 0.6 – using your usual correction factor-this mmol/l should be documented in your diary. More Above Give a dose of rapid acting insulin. This than 14 0.6 but should be 10% of your total daily dose (TDD)* mmol/l below The TDD should be written on the back of 1.5 your diary. Above Give a dose of rapid acting insulin. This 1.5 should be 20% of your total daily dose (TDD). The TDD should be written on the back of your diary. If the ketone level stays above 1.5 you will need to bring your child to hospital (contact the diabetes team or Ward 1A – see contacts section) *Total Daily Dose (TDD) is calculated by adding together ALL daily insulin doses (rapid acting, e.g.Novorapid and long acting 60 e.g.Levemir/Lantus) Rule 6: telephone for advice. Please feel free to call us for advice at any time. In particular, we would expect you to always call for advice, or go directly to hospital if: • Vomiting persists • You have given 3 or more correction doses for high ketones • You are unable to keep blood glucose level above 4mmol/l • You are unable to get blood glucose below 14mmol/l despite extra insulin • Your child is becoming more unwell; • You are worried or exhausted • Your child is very young • You are unable to get ketone levels below 1.5 mmol/l • You don’t know what to do next • Your child has any symptoms of DKA.
Do not leave things too late before calling for help
Food If your child is ill and the blood glucose level is high do not try to control it by not eating. Even if they do not feel like eating their body still needs the energy from carbohydrates. Try replacing foods with sugary drinks or plain foods. Giving small amounts frequently may be better especially during vomiting illnesses. 61 Your child will need extra fluids, especially if they have a high temperature or ketones to prevent dehydration and flush out ketones. To encourage young children to drink the use of straws and novelty cups may help.
Suggestions for diet and fluids whilst your child is unwell Instead of eating full meals and snacks try and encourage your child to have small amounts of sugary food every 30-60 minutes. The examples below often work well especially with younger children. • 100ml of ‘flat’ sugary cola, fanta, lemonade • 60ml of ‘flat’ Lucozade • 110ml natural fruit juice • 3 dextrose tablets • 3 sweets e.g. fruit pastilles • 1/3 carton Ribena • Small ice lolly • Plain biscuit e.g. Digestive, Rich Tea or Hob Nobs • Toast
Immunisations Immunisations are an important part of preventing ill health and the Diabetes Team will encourage your child to have them. There may be a short term effect on blood glucose levels. The effect should not be long enough to need to increase insulin doses. However, you may need to take correction doses. 62 Schools and Nursery When your child is diagnosed their Diabetes Nurse will contact the school or nursery to arrange a visit, which we would like you to attend, if possible. At the visit the nurse will: 1. Explain to staff what diabetes is and explain the treatment 2. Arrange a secure place for diabetes equipment to be stored (see below) 3. Teach staff to support children with blood glucose tests and injections if needed 4. Teach staff how to recognise and treat hypoglycaemia 5. Teach staff to manage diabetes during exercise 6. Explain the need for medical identity jewellery 7. Discuss a system to record when injections are given by staff 8. Discuss school meals or packed lunches 9. Discuss with staff how to tell other pupils in the class about diabetes 10. Complete a care plan
Care Plans Care Plans are written documents, either on paper or electronically that outline any medical condition and the care needed. Please ask if you would like a copy of the booklet given to school. 63 Updating Care Plans Meeting with school staff to update the care plan is important – especially as children move class each year, or when there is a change in treatment.
Equipment you need to provide for the school Please label each item with your child’s name to prevent confusion if there is more than one pupil with diabetes at the school. • Insulin pen and needles • A blood glucose meter, test strips and lancets • A ‘sharps container’ • Medical identity jewellery • Extra carbohydrate snack for activity • A hypo box
Hypo Box The hypo box should be kept somewhere easily accessed by the child and should contain the following items even if your child carries a hypo remedy. • Dextrose /Glucotabs • Sugary drink (and a cup marked to the appropriate level) or small cans of coke or lemonade not diet • Glucose Gel • Biscuits or crisps – something with a long ‘use by’ date
64 Staff performing blood glucose tests and injections If your child is too young to give their own injections or blood tests we will ask for volunteer staff from the school to undertake them. Training will be provided and we ask that a parent attends school for the first few days to support the staff until they, and your child are confident. If staff do not wish to volunteer for the procedure your nurse will work with the school and Education Department to resolve the issue. It is the responsibility of parents to ensure the insulin cartridge is replaced on a monthly basis – many families change it on the first day of every month as a simple reminder. If a change in the lunchtime insulin dose or carbohydrate ratio has been made please inform the school.
School meals Your dietitian will discuss with you whether your child has school meals or a packed lunch. Schools are supportive, especially with younger children in supervising whether meals have been eaten. Some schools, especially larger secondary schools will provide your child with a card which allows them to leave class a few minutes early to undertake blood tests or injections. The guidance teacher is usually the person who would provide this.
65 Common reason for the Diabetes Team to contact school • Children changing to new school • ‘Trouble shooting’ • If a new treatment is started for example, pump therapy • Planning for a residential trip
School Examinations Examinations are an important aspect of education. In order to ensure that pupils with diabetes perform well some preparation is needed. Your child should be allowed to have hypo treatment accessible in the examination room. They may need to leave the exam room until they recover (approximately 20 minutes) and then be allowed to make up this time at the end of the exam. If your child’s school needs a letter to allow for the above arrangements to be made please do not hesitate to contact the team. If your child was diagnosed around the time of exams a letter for the exam board can be provided for this to be taken into consideration.
Medical Identity Jewellery It is not possible to see that a child has diabetes so we would encourage some form of identity jewellery to be worn at all times. Most schools prefer a bracelet or wrist band rather than a necklace for safety reasons.
66 Diabetes Clinic It is vital for you and your child to attend the diabetes clinic. Appointments will be offered frequently around the time your child is diagnosed, after that you will be offered a minimum of 4 appointments each year. The clinic offers an important opportunity for the Diabetes Team to monitor your child’s diabetes and for you to discuss any issues or questions you may have. There will be times when you are not able to attend your appointment and we request that you contact the appointment service on 01563 827069/827070 to reschedule the appointment as soon as possible. However, there may be a delay of a few weeks before the appointment can be rescheduled. If you are experiencing difficulties in attending the clinic please discuss this with a member of the team.
Who will be at the clinic? • The Paediatric Diabetes Consultants (Children’s Doctor) • Children’s Diabetes Nurses • Children’s Diabetes Dietitians • Staff from the Outpatient Department • Psychologist Occasionally your child may be seen by a trainee doctor (a senior children’s doctor) who will be working closely with the consultants.
67 When are the clinics held? • Paediatric: • Teenage Transition:
What Happens at Clinic? Height and Weight Measurements: Clinic nurses will check your child’s height and weight to ensure their growth is appropriate. The results will be ‘plotted’ on a centile chart (expected range for child’s growth) which keeps an on-going record of their growth.
HbA1c (Glycosylated haemoglobin) A blood test is taken from a finger prick test. This is a different test from the blood glucose test you measure at home. An HbA1c measures the long term blood glucose control for the last 3-4 months. The test measures how much glucose has combined with the haemoglobin in the blood (haemoglobin is the substance that carries the oxygen and nutrients in the red blood cells). Each red blood cell lives for 3-4 months so the blood test gives information for that time. Evidence from research, the Diabetes Control and Complications Trial 1993 showed that people with diabetes, who have high HbA1c results for long periods, are at increased risk of complications. The test result is recorded in mmol/mol and the target is 48-58 mmol/mol. Until 2011 the HbA1c test was recorded as a percentage (%). If you read older research the results will be written in this way. The equivalent of 58 mmol/mol is 7.5%.
68 Both the blood glucose results you record at home and the HbA1c will be used during your appointment with the team.
Blood Glucose Diary Remember to bring your diary with you to the clinic. Your blood glucose diary helps you to manage your diabetes. It allows you to look for patterns in blood glucose levels and consider changes that may be needed. These changes may be required outwith clinic times, don’t wait until your next clinic appointment to make changes, contact the team as soon as you notice a pattern.
Diasend When you come to clinic please bring your blood glucose meter(s) with you. The meter will be downloaded to a web based site called Diasend to give a clear picture of the patterns of blood glucose tests during the day and night. If diasend is unavailable, your diary will be used to help inform if any changes are required. When you are discussing your child’s health with the team please update the team if your child has developed another condition or, if your child is taking any other medicine that has either been prescribed or that you have obtained from a chemist or other source.
69 Diabetes Clinic Annual Review From the age of 12, a review will be carried out every year (often call the M.O.T). Tests that will be done: 1. Blood pressure – taken by wrapping a cuff around the upper arm. If blood glucose levels are high, damage to the kidneys can cause an increase in blood pressure. 2. Urine sample – the urine sample will be sent to the laboratory to be checked for protein to ensure there are no problems with your child’s kidneys. If your daughter is having a period when asked for the urine sample wait until after her period is over as it will affect the result. 3. Blood tests from a vein in your child’s hand or arm will check for: -- Cholesterol -- Coeliac disease -- Thyroid levels -- Laboratory HbA1C 4. Eye Screening – from the age of 12 years your child will be invited to attend for digital eye screening. Your invitation letter will include a list of local opticians that are able to carry out this test. This screening test checks for signs of retinopathy, a problem with the blood vessels in the eye.
70 Conditions associated with diabetes At diagnosis and during the annual review blood tests are taken to check for some medical conditions which are more common in people who have diabetes. The conditions are not caused by having diabetes but they are called ‘autoimmune’ because, like Type 1 diabetes, they have been caused by the body itself.
Thyroid problems The thyroid gland is located in the neck and produces a hormone called thyroxine which controls the body’s ‘metabolic rate’. If the body damages the thyroid gland it is unable to produce enough thyroxine resulting in hypothyroidism. The body’s metabolic rate slows down and symptoms start to show. These include: • Weight gain • Poor growth • Dry skin and hair • Lack of energy • Constipation • Frequently feeling cold • Hypoglycaemia The treatment would be to give thyroxine hormone which is given in a tablet.
71 Coeliac disease The food we eat is absorbed mainly from the intestine into the blood. The lining of the intestine is not a smooth tube, it has small finger like growths to help absorb the food called ‘villi’. If the body has coeliac disease it becomes sensitive to gluten which is a protein found in wheat, barley, rye and oats. The effect is that the villi become flattened. The body is unable to absorb the food properly and symptoms start to show. These include: • Diarrhoea or constipation • Tummy ache • Bloating The blood test would show that coeliac disease may be present. This is confirmed by carrying out an endoscopy, done in children under a general anaesthetic, which means a small sample of the bowel is removed and sent to the laboratory for checking under a microscope. The treatment is to remove all the gluten from the diet completely. The Children’s Diabetes Dietitians would be able to discuss which foods need to be removed and what replacements are available. This change in diet is for life.
72 Complications This section will explain: • What long term problems can be caused by diabetes • How day to day management of diabetes can minimise these problems Careful management of your child’s diabetes is sometimes a difficult goal to achieve, but it is important to keep trying to prevent problems later in life. If blood glucose levels are out of control in the short term your child is at increased risk of hypoglycaemia or ketoacidosis. However if the diabetes is uncontrolled for long periods, that is years rather than months, the high glucose levels will start to damage the body. The exact process that causes the damage to the blood vessels is not yet fully understood, but it is known that continued high HbA1c tests increase the chance of problems developing. Complications are most common in the eyes, heart, kidneys and feet, however can also affect other nerves and circulation.
Eyes Blurred vision at the time of diagnosis (or when control is very poor) is not uncommon. It is caused by high glucose levels changing the shape of the eye. The problem will settle down with no long term effects after a few weeks. Diabetic retinopathy is the name given to the long term problem. 73 This occurs when the layer at the back of the eye (retina) is damaged. The retina is covered in a layer of tiny blood vessels which can become damaged by high blood glucose levels. The blood vessels may burst causing a small bleed. The blood is most often reabsorbed, but the body will try and create new blood vessels around the damaged ones. These blood vessels are even more fragile and may burst making the problem worse. In the early stages your child would not be able to feel anything (it doesn’t hurt) but eventually their sight could be seriously affected. Your child’s eyes will be photographed yearly once they are 12 years old, and a specialist will examine the photographs to check for problems. Improving diabetes control will prevent the problem becoming worse, but if needed laser therapy may be used to help the situation.
Heart Problems People with diabetes can develop the same heart problems as those who do not have diabetes, but the problems happen at a younger age. A blood sample is checked every year at clinic to check for cholesterol (fat) levels in the blood and your child’s blood pressure will be taken. The best way to look after your child’s heart is to follow the rules that apply to everyone – try not to eat too much
74 fatty foods like chips and crisps, and exercise regularly. The dietitian will see you as often as you need to discuss all aspects of your child’s diet.
Kidneys The kidneys are part of the body’s cleaning system. All the blood is filtered and the waste products are disposed of into the urine. At the time of diagnosis your child will have been passing urine frequently, and may have started wetting the bed, because of the high blood glucose levels. This is a temporary and usually a short term problem that will get better as the blood glucose levels are brought under control and it does not usually cause any long term effects. However if the glucose levels remain high they will damage the kidneys allowing protein (albumin) from the blood to leak into the urine. If the diabetes control is not improved at this stage the damage will get worse until eventually the kidneys fail completely and are unable to filter the blood at all. This is called nephropathy. A urine sample is taken each year at clinic to check for the amount of protein in the urine. If there are any problems noted you may be asked for a second sample of your child’s urine as a check. The main reasons for problems is if your child’s HbA1c has been high. If control is improved the kidneys will probably return to normal. The other main reason for protein in the urine is infection. 75 Can complications be prevented? The evidence from many studies shows that people with high HbA1c levels for long periods are most likely to develop complications. However, some people seem to be more susceptible to them, so although no one can give you a guarantee that problems will not develop, maintaining HbA1c in the target range is the best option. Keeping diabetes under control is difficult, especially with children and teenagers. There will be times when other issues are more important than diabetes and your child’s control deteriorates. Recent evidence shows that if there is a short period of poor control, but the HbA1cs have previously been alright there may be some protection for a short time against the effect of high blood glucose levels.
Diabetic foot complications Circulation complications can develop in diabetes that involves large and/or small blood vessels, circulation of the blood through the vessels can be affected. Tiny blood vessels can become damaged by high blood glucose levels this can lead to damage to skin, ulceration and infection. Neuropathy is a complication that increases in relation to duration of diabetes this can result in loss of pain sensation, burning sensations, tingling or coldness. This makes the feet susceptible to injury as they may not feel pain. Improving diabetic control as well as checking feet daily will reduce the risk of foot problems.
76 As your child moves into the transition clinic they will receive health education on their feet and diabetic foot reviews, assessment of their circulation and sensation will continue yearly as an adult. Your child can still develop problems with feet such as veruca’s, ingrown toenails. In Ayrshire you can self-refer to podiatry services. Please ask a member of the team who can provide a self-referral form.
77 Talking to teenagers Talking to your child about complications can be very difficult for both of you. Children and teenagers of different ages have varying levels of understanding and interest. In younger children you can often be led by the kind of questions that your child will ask. Keeping the answers simple is best, especially as younger children do not understand long periods of time. Understanding that problems could happen in 15 years times when you are only 8 is impossible. Teenagers however do need to be told about the long term issues. Choosing your time is important. They may start asking questions depending if they have seen or heard something. If you or the Diabetes Team don’t tell them about it they may hear wrong information or worry that it is so bad, people are keeping secrets from them.
Sex, Drugs and Rock ‘n’ Roll A well-worn cliché for the title, but most of the risk taking behaviours of teenagers fall within this category. Teenagers with diabetes are no different to any other teenagers in relation to the trials and tribulations of growing up! They may be rude, selfish, vain, neurotic, embarrassed by their parents, generally difficult to live with! All this and they have their diabetes to contend with. It is only natural that at times they will try and push barriers, resent their diabetes and indulge in risk taking behaviours seen as ‘normal’ within their peer group.
78 The following section gives an overview on some of the issues that may happen in teenage years.
Alcohol There is no reason for people with diabetes not to drink but it is important to take it easy and know how alcohol affects diabetes control. It is wise to remember that underage drinking is illegal. One of the dangers of alcohol is that it can cause hypos. The liver stores glucose, which can be released into the blood stream should a hypo occur. However, alcohol blocks the production of glucose in the liver, meaning that the possibility of a hypo due to alcohol consumption is higher. Also, the blood glucose may initially rise, but fall later and the hypo effect of alcohol could be present a number of hours after the alcohol is consumed. The risks of a severe hypo are far greater when under the influence of alcohol as judgement is affected and your child may not realise they are going hypo.
Some basic safety rules are: • Always eat something when drinking. A large, starchy meal before and after alcohol is advised. Always carry hypo remedies • Drink in moderation • Wear ID – a hypo could be misinterpreted as being drunk • Make sure friends are aware of diabetes and what to do.
79 Drugs Recreational drugs can have a significant effect on diabetes control. Different types of drugs are available nowadays and most teenagers will be fairly knowledgeable about the dangers of drug taking. The risk of hypos due to reduced awareness/forgetting to eat are greatly increased with drug use, as are the risks of high blood glucose levels due to missed insulin (which could lead to ketoacidosis). Taking drugs is never a good idea, but with diabetes in the equation, it could be very dangerous. If you are worried about drug use, please contact the Diabetes Team.
Smoking Everybody knows that smoking is an unhealthy, unsociable and expensive habit. Smoking and diabetes are a lethal combination. Research shows that smoking, for a person with diabetes, will increase the risk for renal failure, visual impairment, foot ulcers, leg amputations and heart attacks. This is because having diabetes itself imposes an increased risk on these things and smoking is well known for its damaging effect on the blood vessels in the body. Peer pressure is often the reason teenagers start smoking and experimentation and risk taking are part of growing up. Ensuring teenagers have the hard facts about smoking and diabetes is the best approach. Going on at them may encourage rebellion and may have the opposite effect to the one desired.
80 Sex Teenagers with diabetes will be just the same as their friends in relation to their attitude to sexual activity. Sexually transmitted diseases are on the increase and protection against these and unplanned pregnancy is very important. Condoms are the only form of contraception to offer protection against both these conditions and are therefore highly recommended. However, all forms of contraception are suitable for people with diabetes and this needs to be discussed with the GP or the Diabetes Team. If blood glucose levels are high, menstruation may be erratic or even stop. However, pregnancy is still likely if having unprotected sex. Unplanned pregnancy in diabetes can be very traumatic. Pregnancy affects blood glucose control and needs careful planning. High blood glucose before and during a pregnancy can pose risks for the mother and baby, pregnancy in poorly controlled diabetes often ends in miscarriage. There is also a risk of a very large baby, which will cause problems during and after birth. Sex is a form of exercise, so extra carbohydrate may be needed to avoid hypos.
81 Driving Young people are able to apply for a provisional driving license at the age of 17. Having diabetes will not stop them driving but they will need to declare it when completing the application form. A medical form will also be required - this should be sent to the Diabetes Consultant at the transition clinic. Up to date guidance is available at the teenage and young adult clinics or on the diabetes UK website. A few precautions are necessary to ensure that your child is safe whilst driving. Hypoglycaemia is the biggest risk, both to the driver and the other road users so blood glucose testing must be undertaken, especially before driving and if hypoglycaemia is confirmed you must be fully recovered before driving. Identity jewellery should always be worn. L
82 Oral Health Having a healthy mouth is important for all children to help them to eat, speak and look attractive. It is particularly important for children with diabetes to have a healthy mouth as: • Dental disease may affect their diabetic control for example, toothache may prevent normal eating, dental abscess or infections may affect insulin levels • Diabetes may affect receiving dental treatment – young children may be anxious about dental treatment and it may suit them better to have a general anaesthetic (go to sleep). This would need to be in hospital • People with diabetes are more likely to have gum disease than people without diabetes. Gum disease may lead to early tooth loss. For these reasons it is very important to take extra care about looking after the teeth of children with diabetes so you should tell your dentist about the diagnosis of diabetes at your child’s next visit.
To Prevent Dental Disease 1. Children should brush their teeth with a toothbrush and toothpaste twice every day. Children up to the age of about 7 years will need help and supervision to brush their teeth properly. • Use a small-headed toothbrush and apply a pea-sized amount of toothpaste to a dry brush • Brush the teeth thoroughly to remove all the food debris and plaque, which is a sticky film of bacteria that
83 grows on the teeth. This plaque causes gum disease. If the plaque is brushed away every day the gums will remain healthy. • Spit it out after brushing rather than rinsing. 2. Use a family fluoride toothpaste. Fluoride helps prevent cavities developing and regular tooth brushing is essential. Fluoride is also available as drops or tablets, a mouthwash or vanish; ask your dentist which is best for your child.
3. Visit the dentist regularly for check-ups, preventive advice and treatments. Your family dentists can provide simple dental treatment using a local anaesthetic (injection) but if a general anaesthetic were required your child would be referred to a specialist children’s dentist. When you visit the dentist remember to: • Tell your dentist your child has diabetes • Ensure your child eats normally before dental visits to prevent the risk of hypoglycaemia. • Self-monitor glucose levels. It is important to be registered with a local dentist. If you are not registered and have a dental emergency, contact your local A&E who will put you in contact with local emergency dental services.
84 Travel Information Families may travel outside the UK for a number of reasons; to visit family, for holidays or on business. Diabetes can be managed with a little preparation. Outlined below are the general principles to be considered when planning a trip, the Diabetes Team will give you individual advice as needed. Before you travel: 1. Inform your travel insurance company about your child’s diabetes to ensure it is covered and obtain an EHIC card if travelling within Europe. 2. Contact your GP to arrange a prescription for all items (including ketone testing strips and glucagon). You will need double the amount of equipment whilst you are away. 3. Ensure you have a ‘customs’ letter from the diabetes team which will confirm that you are carrying medical equipment through customs. 4. When packing ensure all equipment is packed in the hand luggage. 5. Divide the diabetes equipment in 2 separate packs and put them in 2 peoples’ bags (just in case one bag gets lost or stolen). 6. The insulin pens can go through the x-ray machine at the airport, however if your child wears an insulin pump this MUST BE REMOVED before you go through the x-ray machine.
85 7. If there is a time difference of up to 2 hours between your destination and the UK you can change your watch immediately to the local time when you arrive. 8. If there is a difference of more than 2 hours the Diabetes Team will help you calculate how to change injection times. 9. If there is a significant difference in climate the team may recommend a reduction in insulin dose. 10. If immunisations or medicine (for example malaria tablets) are needed check you have made arrangements with your local doctor (GP). 11. If you can, check where the nearest hospital/medical facility is to your destination. 12. Check extra blood glucose tests during the flight especially long haul flights. 13. Ensure you have a hypo remedy during the flight REMEMBER you will not be able to carry drinks through security; however they can be purchased and taken on board once you’ve passed these checks. 14. Carry extra carbohydrate snacks with you in case of delays.
When you are away: 1. Check the insulin is kept in a cool place. If fridges are not available consider the use of a commercially available ‘cool pack’ or store it in a cool room – often the bathroom. 2. Check extra blood glucose tests especially in the first few days to monitor if any changes in dose are working effectively. 86 3. Check you know how to treat vomiting and diarrhoea illnesses 4. Take all the usual precautions – be careful where you buy drinks/ice cream etc. 5. Check your child is wearing some identity jewellery. 6. If possible check where the nearest medical centre/ hospital is. 7. Carry a list of all the medications and dosage your child uses.
87 Glossary • Auto immune - A process in which the immune system damages the body’s organs • Beta cells - Cells found within the pancreas in clusters known as islets. They produce and release insulin • Basal insulin - This is the background or long acting insulin • Bolus insulin - This is the very fast acting insulin given at mealtimes to cover carbohydrate intake or use as correction. • Blood glucose - (BG) The level or concentration of glucose in the blood • Carbohydrate (carbs) - One of the three main energy-giving nutrients in foods, composed mainly of sugars and starches • Coeliac disease - A condition where there is intolerance to gluten in the diet • CSII – Continuous subcutaneous insulin infusion (pump therapy) • Diabetic Ketoacidosis (DKA) – a medical emergency due to insufficient insulin. Fat is used by the body for energy, producing acids called ketones which can be life threatening. • Glucagon – hormone which increases glucose release from liver stores and balances the action of insulin. It is produced in the alpha cells in the pancreas. • Glucagen kit - A box containing a syringe of fluid and a vial of glucagon powder to be injected to treat a severe hypo • Glucose - A sugar which is the main source of energy for the body • Glycosuria - The presence of glucose in the urine • Glycosylated haemoglobin - See HbA1c
88 • HbA1c - A blood test that measures how much glucose is attached to red cells in the blood. It gives a measure of the average blood glucose mainly over the previous 6-8 weeks. • Hormone - A chemical substance produced by one of the glands in the body. Hormones are carried by the blood to other cells in the body, to give ‘messages’ to the cells. The messages have an effect on the function of other cells. • Hyperglycaemia - A high blood glucose level • Hypoglycaemia or ‘hypo’- A low blood glucose level • Hypothyroidism – underactive thyroid gland • ICR - insulin carbohydrate ratio, the amount of grams of carbs per unit of insulin • ISF - insulin sensitivity. A measurement of how much blood glucose is lowered by giving one unit of insulin. • Ketones – acids released into the blood due to breaking down fat for energy • Lypohypertrophy – lumpy injection sites which leads to poor absorption of insulin. • Nephropathy – complication involving the kidneys • Neuropathy – complication involving the nerves • Pancreas – gland that makes insulin, glucagon, and digestive enzymes. • Retinopathy – complication involving the kidneys • Subcutaneous injection – injection into fatty layer below the skin. • Total daily dose TDD – sum of all insulin taken in 24hrs basal + bolus doses • TFT – Thyroid function test All of our publications are available in different languages, larger print, braille (English only), audio tape or another format of your choice.
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Last reviewed: December 2017 Leaflet reference: ND17-005-CC/PIL17-0279