A booklet for children and their families
diabetes and you Introduction This booklet will tell you and your family about Type 1 diabetes (insulin dependent diabetes). There is a lot to learn, but don’t panic, there’s plenty of time and there are lots of people to help. If you have any questions that aren’t answered in this booklet, write them down so that you can ask a member of your diabetes team. If you don’t understand what anything means, always ask someone to explain. It is important to understand diabetes and your treatment so that you can stay healthy and enjoy life. An interactive version of this booklet is available on kids.accu-chek.co.uk or kids.accu-chek.ie
contents 1 2 3 4 5 6 7 8
What is diabetes? How is it treated? What can I eat? Controlling my diabetes Why should I exercise? The diabetes clinic Further information Index
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...keep well and enjoy life
1 Diabetes means that your PANCREAS does not make enough INSULIN. The Pancreas is a gland in your body. Sugar is a fuel used by the body to give you energy and make you feel well. The main sugar in the body is GLUCOSE. Glucose needs to get into the cells in your body to give you energy.
Where is the pancreas? stomach
Insulin is like a key; it opens the door pancreas to the cells in your body and allows the glucose to enter (see the picture on page 12). So, insulin lowers the level of glucose in your bloodstream. When you have diabetes your body doesn’t make enough insulin, so glucose can’t get into the cells. Instead it collects in your blood and isn’t turned into energy. As more and more glucose builds up, your body gets rid of some in your wee (urine). This makes you need to go to the toilet more often, you feel thirsty, you lose weight and you feel tired. Once it has been discovered that you have diabetes, insulin replacement will be started by giving injections. It may sound scary, but the good news is that you will start to feel well again because the injections will lower your blood glucose, by allowing the sugar to get into the cells. 3
1 what is diabetes? But why have I got Type 1 diabetes? We don’t know exactly what causes diabetes, but there are lots of scientists trying to find out. We do know that some people develop diabetes after a viral infection. Sometimes people who develop diabetes have relatives who also have diabetes. Diabetes is NOT • caused by something you have eaten • caused by eating too many sweets or junk food • caused by anything you have said or done • catching (like a cold) • your fault! There really is nothing you, or anyone else could have done to prevent the diabetes from happening. No one is to blame. Now that you have diabetes, you will always need to take insulin to stay healthy. Insulin cannot be taken as a tablet as it would be destroyed by the juices in your stomach and couldn’t do its job properly.
2 How can I stay healthy with diabetes? You will be taught how to balance your insulin doses, your food (see page 10) and exercise (see page 28) in order to stabilise your blood glucose (sugar).
Insulin and injections You will probably have been told that people with your type of diabetes have injections of insulin. All children who develop Type 1 diabetes need insulin injections each day to feel well and keep the amount of glucose in their blood at a healthy level. There are different types of insulin and your diabetes nurse will advise which type is the most suitable for you. PARENTS’ NOTE: Some adults and, increasingly some children, develop diabetes but do not need insulin injections. They have Type 2 or non-insulin dependent diabetes. They can take tablets to make their diabetes easier to control. Unfortunately this medication doesn’t work for Type 1 diabetes.
You may hear the diabetes team talking about the HONEYMOON PERIOD. They are talking about the first few months after diagnosis, when your pancreas is still making some insulin. When the honeymoon period ends, insulin stops being made and you may need a larger dose. When this happens, it does not mean that your diabetes is getting worse. You and your parents will soon learn to give the insulin injections, and in time you will learn to measure the insulin dose and do it for yourself. Don’t worry, you have lots of time to practice this. 5
2 how is it treated? PARENTS’ NOTE: The strength of the insulin your child will use is 100 units per millilitre. In the UK it is called U100. Insulin is available in vials (bottles), cartridges and pre-filled pens. Vials of insulin are for use with syringes, and cartridges are for use with re-useable pen devices. If you use a pre-filled pen, once the insulin has been used up you throw the pen away and start a new one.
The diabetes specialist team decides how much and which type of insulin you will need at first. In time you may decide how much insulin to take by yourself. The amount of insulin you use alters as you grow. You may need more insulin if you are ill, or less insulin if you are doing lots of exercise. At home you will use your blood glucose tests to decide whether you need to change your insulin dose. You will find out about these tests later in this book (see page 17). Why blood glucose levels rise: • Sickness • Growing • Not enough insulin taken • Too much carbohydrate eaten • Stress or anxiety.
Why blood glucose levels fall: • Exercise • Too little carbohydrate eaten • Too much insulin injected • Alcohol.
PARENTS’ NOTE: Insulin options There are many different types of insulin available with different durations of action. • Rapid acting insulins e.g. Actrapid®, Apidra®, Novorapid®, Humulin S®, Humalog® These insulins look clear and get to work shortly after they have been injected. They will last 3-8 hours. • Slow acting insulins e.g. Insulatard®, Levemir®, Humulin I®, Lantus® These insulins can be cloudy or clear. They work slowly and are designed to provide a background level of insulin in the body. They can last 12-24 hours. • Pre-mixed insulins e.g. Novomix 30®, Humulin M3®, Humalog® Mix 25 These insulins contain a proportion of rapid and slow acting insulins. For example, Novomix 30 contains 30% rapid acting and 70% slow acting insulin.
how is it treated?
Your diabetes team will give you all the information you need about the insulin you are prescribed, including how soon to inject it before you eat and how long you can expect the insulin to last. PARENTS’ NOTE: Storing your insulin Keep spare insulin in the door of your fridge at home (Not in the freezer compartment). Insulin you are using must be kept at room temperature, out of direct heat or sunlight. The expiry date of insulin kept at room temperature differs from that of insulin kept in the fridge (check with your diabetes specialist nurse).
Insulin pen devices Most children now use an insulin pen instead of a syringe. You simply dial up the number of units of insulin that you require and then give the injection. There are a variety of pens available and the diabetes team will help you choose the one that is right for you.
Pen needles The needles for the pen devices come in a variety of sizes. These needles are available from your chemist on prescription. If you are unsure about your needle size, talk to your diabetes specialist nurse. Remember, only use them once, then dispose of them safely - your diabetes specialist nurse will tell you how.
PARENTS’ NOTE: Some children are taught how to inject insulin using a syringe and needle. If this is the case, your diabetes specialist nurse will show you how and give you all the information you need. You MUST dispose of all your needles safely. Please discuss the sharpsdisposal scheme in your area with your diabetes specialist nurse. 7
2 how is it treated? Where to give insulin injections Insulin injections are given into the fat just under your skin. There are special areas on your body which are the best for insulin injections. These are the outside of your thighs and upper arms, your tummy and bottom. These places are sometimes called ‘injection sites’.
If the same place is used for each injection, the area will become lumpy and the insulin injected there will not work properly. It’s very important to inject into a different place each time. Each injection should be done in a different place from the last one. A site rotation grid will help you to remember. PARENTS’ NOTE: Insulin is released into the bloodstream at different speeds from the various injection sites. For example, it is released from the tummy more quickly than from the arms and legs. However, exercise such as cycling or swimming may speed up the release of insulin that has been injected into the legs. Extremes of temperature, i.e. hot or cold weather and hot baths can also affect insulin release. Speak to your diabetes specialist nurse for further advice.
how is it treated? The injection Sit in a comfortable chair and try to relax.
You can pinch up a fold of skin or inject straight into the skin. Your nurse can help you decide which way suits you best. It will depend on the length of your needle and your body shape. Remember, if you choose a lifted skin fold, lift only the skin and fat tissue, NOT the muscle underneath as well. Always check the pen is working by doing an ‘air shot’ before each injection (your diabetes specialist nurse will show you how to do this). Then hold the body of the pen, ensuring your thumb can reach the top of the plunger. Push the needle in at 90 degrees to the skin and press the plunger as far as it will go. Count up to 10 before you remove the needle.
PARENTS’ NOTE: If your child is thin, it may be better to give the injection at a slight angle, but make sure that they are using the right sized needle. Discuss this with the diabetes team.
Sometimes you may see a spot of blood when you pull the needle out. This means you have hit a tiny blood vessel under the skin. You can’t avoid this and it will do you no harm, but you might have a small bruise for a day or so. If the insulin leaks out of the injection site you may not have injected deeply enough. If this happens a lot you may need to hold the needle in for longer than 10 seconds. NEVER repeat part of the insulin dose as it could cause hypoglycaemia (see page 18). You could also: • try a new site next time • check that the angle and depth of the needle are correct • make sure you have pushed the plunger down as far as it will go, before counting to ten. 9
3 Diabetes and food You will probably have heard of different types of food at school. This chapter will explain the different food groups and their effect on blood glucose (sugar) levels. Food is divided into three main groups; protein, fat and carbohydrate. Sometimes these food groups overlap. PROTEIN Meat Fish Eggs Cheese Beans/Lentils Milk
FAT Butter Oil Lard Margarine Cream Milk
CARBOHYDRATE Sugar Jam Fruit Potatoes Pasta Yoghurt
Sweets Lemonade Bread Rice Flour
what can I eat? Food is used for energy, growth and repair of any damage to our bodies.
Foods also contain vitamins and minerals which are necessary to make our bodies grow and work properly. For example, you may have heard of vitamin C which is a vitamin found in fruit and vegetables, and calcium which is a mineral found in milk. Most vegetables are not listed in any food groups as they do not contain enough of one food to add them to a list; they consist mainly of water, vitamins, minerals and fibre. FIBRE is found in fruit, vegetables, cereals, lentils and beans, (yes, baked beans are vegetables!) and it is important for everyone to have some fibre in their food. All food groups are important and are used to make energy (protein is also used for growth and repairing your body). If too much energy is taken in and not used, it is stored in the body as fat - so we need to get our energy sums right! We will be more healthy if most of our energy comes from ‘non sweet’ carbohydrate.
Why is food important for people with diabetes? All types of food are important, to give us energy and to make us grow properly. Energy comes most quickly from carbohydrate foods, which are changed into glucose. Although we get energy from fat, it does not change to glucose in the body and so it has no direct effect on blood glucose levels.
3 what can I eat? When you have diabetes, you have plenty of glucose in your blood but you don’t have enough insulin (remember - insulin unlocks the door of the cell to let glucose in and make energy). Carbohydrate foods affect the glucose in your blood and should be eaten regularly throughout the day so that they balance with the insulin that is injected. To help you learn how much carbohydrate you are having in your food, the dietitian will give you a list of foods that contain carbohydrate. If there is fibre in the food as well, this helps to slow down the digestion and absorption of the carbohydrate foods. Carbohydrate from bread, potatoes, cereals, pasta, rice and beans is better for your diabetes control than carbohydrate from things that taste sweet like sugar, sweets, lemonade and jam. You do not need to give up things which taste sweet, you can use low-calorie or diet drinks, e.g. diet Pepsi®, diet Coke®, diet Fanta®, etc. You may also use artificial sweeteners such as Canderel®, Sweetex®, Hermesetas® or saccharine. There will be lots more information in the food book that your dietitian will give you. Your dietitian may talk to you about carbohydrate counting. This is an advanced way of matching your food intake with your insulin requirements. This may be something to think about once you have settled into your life with diabetes. 12
what can I eat?
You may also hear about the glycaemic index (GI). The GI of food refers to how quickly it raises the blood sugar level. Foods with a high GI will raise your blood glucose faster than food with a low GI. Ask your diabetes dietitian for more information.
Will I be hungry? There may be times, especially at the beginning, when you feel particularly hungry. As you had probably lost weight before you found out about your diabetes, it is important that you regain this. As long as you eat sensibly, it shouldn’t matter how much food you eat, as your insulin will be adjusted accordingly. Having diabetes doesn’t mean you will be eating less, you will probably find that you just eat a bit differently. For example, you may eat more of the carbohydrate foods, such as bread, pasta, cereals and potatoes. There will be times when you use more energy, for example, when playing football, swimming or dancing, and you may need to eat more to keep the glucose level in your blood normal. If you use more energy than you put in, the glucose level in your blood will fall too low. It is better, therefore, to eat more carbohydrate in the meal or snack before exercise.
Will I be able to eat sweets? Children like to eat sweets. There is no reason why you cannot eat small amounts of sweets or chocolate, but they are best eaten as part of, or immediately after, a meal containing a mixture of all of the foods already mentioned. So it’s OK sometimes to finish your meal with a sweet treat. Try not to eat sweets for snacks, as eaten alone they are absorbed too quickly. Before exercise you should have more starchy food in your meal or snack, but you may also need something sweet. This will be discussed with you and your parents and examples of sweet food, such as chocolate products, will be in the booklet from your dietitian. 13
3 what can I eat? You may see ‘diabetic’ sweets, chocolate and biscuits in the shops. They are usually expensive and often have the same carbohydrate value as the normal products. Sometimes they are sweetened with Sorbitol®, which can give you diarrhoea if you eat too much. There is no need to buy these products.
Will any kind of food do me harm? Generally, we all eat too much fat. We need to cut down the amount of fat we eat because tiny patches of it can block the veins that carry the blood around our bodies. That doesn’t mean that you have to avoid foods cooked with, or made from fat, but you should eat less of them. In your case we may be talking about crisps, chips, pies, pastry and chocolate, but don’t forget the fat in meat, eggs and cheese. Don’t eat too many protein foods either. Although they contain no carbohydrate, they may contain too much fat. Most snacks are a problem because they also tend to be high in fat. Here are some suggestions of low fat snacks: • Fresh fruit • Twiglets® • Quavers® • Cereal bars • Low fat crisps • Oat based snacks.
For more detailed information, discuss with your dietitian and use the booklet provided. 14
what can I eat?
PARENTS’ NOTE: If your child is under five years, dietary advice regarding fat differs slightly. Very small children, under two, may not be able to eat enough food to get all the calories they need for growth. It is best to give them full fat foods rather than the lower fat versions. After the age of two, children need to eat enough food for normal growth, with as much variety as possible to keep mealtimes fun and interesting. By the age of five, they can be eating the same as the rest of the family, including reduced fat foods like semi-skimmed milk. Remember if your child eats lots of sweet things as a treat, you may need to adjust the dose of insulin, as generally more insulin will be required. Please discuss this further with your Diabetes Specialist Nurse and Dietitian.
Remember • Carbohydrate foods are good for you, especially if they also contain fibre. • Always eat your meals and snacks. • You don’t have to give up things you like, but have them with your meals instead of as snacks. • Try to choose lower fat snacks if possible. • Try to eat a little more carbohydrate with the meal or snack before exercise. Try to avoid being overweight as this can cause health problems now and in the future by adding to the work your heart and blood vessels have to do. The dietitian can help and advise you. Finally, don’t stop going out with friends or to parties - you can still do everything you enjoy.
4 Diabetes control Controlling your diabetes means making sure that your blood glucose (sugar) levels are not too low and not too high and you feel well. Poor control over many years can affect your health, growth and development. People who don’t have diabetes have a blood glucose level of between 4 and 7 mmol/L . You need to learn to keep your blood glucose levels ‘normal’ too by carefully balancing the amount of insulin, food and exercise you have.
How to measure control
This can be done in a few ways. Within the diabetes clinic, your diabetes will be carefully monitored. At home you will be able to monitor your diabetes control by testing your blood glucose levels. Frequent blood glucose testing (2-4 times a day) will help you know how good your diabetes control is. It is important to write your readings in a special diary to help you spot patterns and know if changes to your treatment are needed.
controlling my diabetes
Blood glucose tests These are a very important way of monitoring your diabetes. They tell you exactly how much glucose is in your blood. First of all you need to have blood testing strips and a blood glucose meter. There are lots of meters to choose from. Speak to your diabetes specialist nurse about which system will be best for you. A blood glucose measurement can be carried out easily by taking a small drop of blood from the side of your finger with a finger pricking device such as the Accu-Chek Multiclix®. Tips for successful testing: 1. Wash your hands in warm water and dry thoroughly.* (This will remove any substances which may interfere with the test results). 2. Prick the side of your finger with your finger pricker. 3. Don’t squeeze your finger, hold your hand down below your waist for about 5 seconds. 4. Apply the blood to the blood-testing strip and wait for the machine to flash up your result. * If you are going out for the day and think hand-washing facilities won’t be available, pack a wet flannel in a plastic bag to wipe your fingers with before you test your blood sugar. It is best not to use ‘wipes’ as these can alter your blood glucose reading.
4 controlling my diabetes How often to test Usually the best time to test your blood is before your main meals and before bed. If you are ill, your blood glucose levels may be affected. Therefore you need to test more often in case your insulin dose needs adjusting. Discuss how many tests you need to do with your diabetes team.
Hypoglycaemia ‘hypos’ Hypoglycaemia means LOW blood glucose. This word is often shortened to ‘hypo’. If your blood glucose level falls below 4.0 mmol/L you are likely to feel hypo. In someone who doesn’t have diabetes, the pancreas will stop producing insulin if the blood glucose level falls below normal. But in a person with diabetes the injected insulin will go on working even when the blood glucose level is low. Hypos may happen if your meal or snack is delayed or missed, after vigorous exercise, or if too much insulin is given. The body responds to hypos with a number of warning signs, which may be different in each child. You will learn to recognise these early warning signs and so be able to act quickly to treat them.
controlling my diabetes
Signs of hypoglycaemia If you are hypo, you may feel hungry, sweaty, faint, cold, sick or cross. You may also have a headache, funny vision or pins and needles. Other people may notice that you look pale or dazed with large pupils in your eyes, and are weepy or irritable.
Hypos may be divided into three groups: Mild
You may feel shaky, sweaty, or dizzy. If you recognise the symptoms, you can correct the hypo yourself by taking glucose. Always tell a parent or another adult when this happens.
Moderate You may be confused and unable to help yourself. Another person will need to give you glucose. You should always tell a parent or another adult if this has happened to you. Severe
You lose consciousness and are unable to swallow any food or drink. You may even have a type of convulsion or seizure. If this happens you may be given a special injection by an adult (such as your parent) who knows how to do this.
The earlier the signs of a hypo are recognised, the easier it is to put right. If in doubt check your blood glucose level. 19
4 controlling my diabetes Treating a mild hypo If your blood glucose level is too low, i.e. less than 4 mmol/L, you need to eat something sweet. The following suggestions are a general guide for all age groups. • As soon as the signs of a hypo are noticed, take THREE glucose tablets (10 grams of carbohydrate), or half a cup of Lucozade® (100 ml) or a third of a can (100ml) non-diet (ordinary) cola. • Wait for about 10-15 minutes; if you still do not feel right, repeat the above treatment. If these options are not available, then you may use three sugar lumps or two teaspoons of sugar. If there has been a good response to this quick acting carbohydrate and your blood glucose target has been reached, no further snack is needed. However, you may need to eat something more substantial if you are on twice-a-day insulin injections or your initial blood glucose level was very low. An occasional ‘mild hypo’ is not unusual, even if your diabetes control is good. Always carry glucose tablets (or some form of sugar) with you at all times and have a supply at home, in school and at the homes of your friends and relatives. When doing a blood glucose test always remember to wash your hands first (see also page 17).
Treating a moderate hypo If you don’t treat the mild early warning signs quickly then the symptoms of the hypo will change. You may become confused, drowsy or very bad tempered. It is then best to take sugar in a liquid form e.g. Lucozade®, lemonade or cola (not the diet variety you usually drink). When you recover you should have some food if the next meal or snack is some time away. 20
controlling my diabetes
During a moderate hypo you may become very drowsy and have difficulty in swallowing glucose drinks. GLUCOSE GEL can be useful at this time. Very occasionally you may have a moderate or severe hypo and your parents will be taught how to keep you safe and help you recover.
Treating a severe hypo If you have a severe hypo and lose consciousness, you may be given a special injection of glucagon. Glucagon is a hormone (chemical messenger) which helps to raise the blood glucose level by releasing glucose from stores in your liver. It is given as an injection called a GlucaGen® Kit. Your parents will be shown how to give this injection by the diabetes team. Following a severe hypo you may not feel well for a few hours. After having your initial Hypo treatment, have a starchy snack eg cereal or toast as soon as you can. Children may wake during the night if they are having a hypo, although this is not always the case. Some children (especially those on twice-a-day injections) may need to eat a starchy snack just before going to bed such as cereal with milk or a multigrain cereal bar with a milky drink. This will keep the blood glucose levels topped up during the night. Sometimes after a very active day, you may need to have a bigger snack at bedtime. Talk to your diabetes specialist team about this. PARENTS’ NOTE: Always call a doctor or an ambulance if you remain worried after a severe hypo. If your child has a severe hypo, or several hypos for which you find no reason, you should discuss them with the diabetes team. An older child will need to eat or drink more carbohydrate to treat a hypo than a very young one.
REMEMBER - 4 IS THE FLOOR! 21
4 controlling my diabetes
Hyperglycaemia Hyperglycaemia means HIGH blood glucose. Hyperglycaemia, especially if combined with the symptoms of Ketoacidosis (see page 25) is more dangerous than hypoglycaemia. What to look out for
What can cause it?
• Feeling thirsty
1. Not enough insulin
• Passing urine (weeing) more frequently
2. Infection or illness
• Feeling tired
4. Eating or drinking too much carbohydrate
• Tummy pain • Mood changes • Loss of concentration.
3. Less exercise than usual
5. Sudden excitement or stress.
If your blood glucose level stays above 9mmol/L this is a sign that you may need more insulin. As you become more used to your diabetes, your diabetes team will teach you how to change your insulin dose in response to high blood glucose levels at different times of the day. Seek advice if: • Your blood glucose tests are high for more than two days • Your blood glucose tests are high and you feel ill.
controlling my diabetes
If you have high blood glucose tests and you feel sick, vomit or become drowsy, your parents must call your diabetes specialist nurse or doctor, or take you to A&E straight away. If your nurse or doctor is not available dial the number given to you for ‘out of hours’ advice. NEVER OMIT INSULIN – SEEK ADVICE IF YOU ARE WORRIED.
4 controlling my diabetes Hyperglycaemia and ketones PARENTS’ NOTE: Ketones are chemicals produced in the liver as a result of breakdown of fat. The presence of insulin usually keeps this process at bay, but when the body can’t use glucose for energy, because of lack of insulin, the body will burn fat for energy instead and ketones will accumulate in the blood. If the body produces too many ketones, they can make the blood too acid. This is called ‘ketoacidosis’ and can be lifethreatening (see page 25).
KETONES show in your blood and urine when you don’t have enough insulin. If ketones appear, this is a warning sign that your diabetes is not well controlled. This may happen if you have an infection or illness. Your diabetes specialist nurse may recommend testing for ketones in your urine or blood using a ketone-testing strip and, if so, will show you how to do this. Your glucose levels will probably be high at these times too, so remember to carry out blood glucose tests more often if signs of ketones are present. Additionally, if you feel unwell it is very important to call for advice as it may mean that you need more insulin. Hyperglycaemia + Ketones + Feeling ill = KETOACIDOSIS = DANGER! PARENTS’ NOTE: Parents of young children with diabetes, of four years or younger, may notice ketones first thing in the morning, without the blood glucose test being high. This may not be due to illness as mentioned above, but simply due to the child not eating for ten or eleven hours overnight. The ketones in this instance will disappear quickly, certainly by lunchtime.
controlling my diabetes
Ketoacidosis KETOACIDOSIS occurs when the body produces too many ketones and they make the blood too acid. This can be life-threatening. Warning signs of KETOACIDOSIS: • An increased thirst
• Tummy pain
• Passing more urine day and night
• Cold, dry skin
• High blood glucose tests
• Deep rapid breathing
• Ketones in the urine or blood
• Sweet smell on the breath (similar to nail polish remover).
• Nausea or vomiting • Drowsiness
REMEMBER: Never miss your insulin injection (even if you do not feel like eating). If you are not eating, or you are vomiting, your dose of insulin may need to be altered. In these circumstances, ALWAYS call your diabetes team for advice. • If you are feeling unwell at all, check your blood glucose level more frequently. Ketones can occur even if your blood glucose is normal/low. • You will not get more illnesses now that you have diabetes, but illness can upset the control of your diabetes. • During times of illness you may need more insulin.
Always call your diabetes team for advice if you are worried or unsure of what to do.
4 controlling my diabetes What to do about food when you are ill • During illness, glucose is released from stores in the body into the blood, so you don’t always need to eat all of your usual amount of carbohydrate. • You may find that illness reduces your appetite. • Try to take your carbohydrate as small, frequent snacks or drinks - see the examples on page 27. • It is very important for you to drink plenty of fluids. Clear fluids should be taken as small frequent sips. • If you are feeling sick or vomiting, replace the carbohydrate as soon as possible after the vomiting has settled. PARENTS’ NOTE: Checking blood glucose more often will help you decide what to do. But if vomiting persists call your diabetes team straight away for advice.
NEVER OMIT INSULIN
controlling my diabetes
PARENTS’ NOTE: Food and fluid on sick days Encourage your child to drink one of the following fluids containing carbohydrate throughout the illness time - every two hours, depending on blood glucose levels. 50 - 100 mls Lucozade® 100 - 150 mls fruit juice (apple, grape, orange etc.) 100 - 150 mls full sugar Ribena® (2 tablespoons of Ribena® in water)
100 mls water with 2-3 teaspoons of Maxijul® for younger children (see dietitian) Flat cola (non-diet)
As well as sugar-containing fluids, offer sips of water or sugar free drinks throughout the day or night. In addition, try the following if your child is feeling sick and (despite taking the sweet drinks above) is finding it difficult to keep blood glucose levels above 4 mmol/L. 2 teaspoons jam, honey or marmalade 2 teaspoons lemon curd 3 dextrose tablets 4 fruit gums or fruit pastilles 3 teaspoons of dried fruit, e.g. sultanas
Should you be unable to maintain a blood glucose level above 4mmol/L or if your child vomits all fluids, you need to contact the emergency ‘on-call’ service for advice.
Here are some suggested light snacks for use when children begin to feel better. They can be taken 2-3 hourly until their appetite returns to normal. 1/3 tin of light custard or rice
Scone or muffin
1/2 packet of Angel Delight® mix (sugar free) plus milk
Small tin of soup
Banana on toast or sandwich Ice cream with chopped banana or tinned fruit in natural juice
Mousse Yoghurt (not diet) Cup-a-soup®
Toast with jam, honey or marmalade Weetabix® or cereal with milk
5 Get moving! Exercise is good for everyone, especially children with diabetes. Exercise keeps you fit and can help improve your diabetes control. All types of activity require energy and this comes mainly from carbohydrate. You may need to alter your insulin or food intake on days when you are exercising a lot. Extra carbohydrate can be added to the main meal or snack before the exercise, or if your activity is unplanned, can be taken as a snack just beforehand. When taking part in a new activity, test your blood glucose before and afterwards, so that you can work out what effect the exercise has had. This will help you decide how much extra carbohydrate you need, or what reduction to your insulin dose might be appropriate next time. Always carry some glucose, especially when exercising. Ask a parent, grandparent or friend to sew a special pocket into your sports kit in which to carry a few glucose tablets.
why should I exercise?
Outdoor activities where you get wet and cold e.g. canoeing, swimming or skiing, can mean that you use up a lot of energy just keeping warm. You may need to eat extra carbohydrate to cover this. It is sensible for you and your parents to talk to your sports teacher at school and explain about hypos and the need to eat before strenuous exercise. You can also discuss insulin dose alterations in relation to exercise with your diabetes team. Sometimes your blood glucose (sugar) may rise after exercise, especially if you have done a strenuous activity. This is caused by the adrenaline your body releases. Remember exercise will cause your blood glucose to fall, though it might be a few hours later. You could be at risk of a hypo for up to 24 hours following the activity. So always monitor your blood glucose levels closely. PARENTS’ NOTE: See note on page 8 for information on insulin absorption when exercising.
6 This is your clinic. You and your family will come to the clinic about four times each year. The regular checks given at the clinic are important to ensure your diabetes is well managed now and in the future. There will be plenty of time to discuss your diabetes, as you will have the opportunity to talk to the dietitian, doctor and nurses. Each time you come to the clinic you will be weighed, your height will be measured and a blood test called the HbA1c or the glycosylated haemoglobin will be taken. This test tells the average blood glucose level for the 2-3 months before the clinic visit. You will learn more about the importance of the HbA1c and its effect on growth, development and long-term health from your diabetes team.
the diabetes clinic
PARENTS’ NOTE: HbA1c/glycosylated haemoglobin level HbA1c is now reported in two units: a percentage value and as a mmol/mol reading. A normal reference range for someone without diabetes may be shown as 4-6% (or 20-42 mmol/mol in new units). The recommended HbA1c of less than 7.5% may also be reported as less than 58 mmol/mol. This laboratory test provides an indication of the recent glucose levels in the body. In simple terms, the test assesses the amount of glucose that has been in the blood over the past 2-3 months. If diabetes control has been poor (frequent and/or persistent high blood sugar levels), more glucose will be attached to a protein in the red blood cells, resulting in a higher HbA1c level. If, on the other hand, the diabetes control has been good (relatively normal blood sugar levels) the HbA1c will be closer to the normal range. Recent UK Guidelines, NICE (April 2010) state that for children and young people with Type 1 Diabetes an HbA1c of less than 7.5% (below 58mmol/mol in new units) is recommended. Research (DCCT 1993) has shown that keeping blood glucose levels under tight control helps to reduce the risk of developing serious diabetes complications in future. Your diabetes specialist nurse will advise the target level for your child, and can explain the importance of regular blood glucose monitoring
You may see a dentist and an ophthalmologist (eye specialist) while you are in hospital. After this, your eyes will be checked each year in the clinic but you should also visit your own optician and dentist annually. From the age of 12 years, you should be referred for annual retinal photography, as part of you diabetes annual review. Each year you will have an ANNUAL REVIEW, a yearly assessment by the diabetes team. At your annual review you will have a ‘head to toe’ assessment. PARENTS’ NOTE: The aim of the Annual Review is to ensure that the diabetes is not causing any additional health problems. Your child will usually have a blood test to check for cholesterol levels, thyroid function and to look for signs of coeliac disease. Your child’s urine will be checked for micro-albuminuria to check kidney function. Feet will also be checked and your child will be referred to a podiatrist if any foot problems are discovered. 31
6 the diabetes clinic During at least one of your visits to the clinic each year you may have the chance to meet other children of around your age who also have diabetes, and you will take part in some activities and games. Sometimes there will be activities and holidays organised for you. Apart from having fun and meeting others with diabetes, the aim is to help you learn to look after your diabetes yourself, so that you can enjoy trips away from home such as with your school, Scouts, or Guides. Your diabetes team are always open to new ideas so if you can think of anything you would like to do, then let them know.
Members of the diabetes team: • Consultant Paediatric Endocrinologist/Consultant Paediatrician with a special interest in diabetes • Paediatric Registrar • Diabetes Specialist Nurse • Paediatric Dietitian • Paediatric Psychologist • Podiatrist 32
the diabetes clinic
Supplies You can collect some supplies of the equipment you need from the clinic, although most items are now available through your family doctor.
Available from hospital clinic/chemist: • Monitoring diary (clinic) • Insulin pen device • Blood glucose testing kit • Educational materials Available from GP: • Lancets for finger pricking devices • Blood glucose test strips • Ketone test strips • Disposable insulin syringes • Insulin • Glucagon (GlucaGen® Kit) • Glucogel® • Needle clipper • Insulin pen needles • Insulin pens • Sharps box 33
7 The future There has been great progress in the care of people with diabetes over the last twenty years, and there are bound to be further developments just around the corner (see page 41 for information on insulin pumps). Meanwhile, we know that good control of your diabetes will help to ensure a healthy future. You may hear of people with diabetes who develop problems with their eyes, kidneys, heart or feet. These problems can often be avoided if you look after your diabetes. People who do develop eye problems can be treated by modern methods that are very successful. You can also take care of your feet by wearing well fitting shoes and cutting your toe nails to the shape of your toe, not straight across.
Visits to the dentist You may have your teeth examined while you are having your diabetes annual review, but you should continue to visit your own dentist as usual. If you are having any dental treatment, local anaesthetics can be given as before, but if a general anaesthetic is needed, this may mean a hospital admission. You will be able to go home from hospital once you are able to eat and drink normally. Remind your dentist and family doctor at each visit that you have diabetes. 34
Babysitters and childcare It is essential that anyone looking after you has a good knowledge of diabetes. Your diabetes specialist nurse can advise your parents on the best advice to give them. Specific written information for babysitters e.g. timing of meals and snacks, what to do about hypos and who to contact in an emergency, can be obtained from your diabetes team or Diabetes UK (DUK). See page 42 for DUK details.
School At school you will be able to join in all of your normal activities, including going on school trips. Your parents and the diabetes specialist nurse will visit the school and talk to your teachers about your diabetes. Your school nurse will also know about your diagnosis and will be there to provide additional support if you need it. A special information booklet will be given to you to fill in and give to your school. Your teachers will learn about hypos and will understand that there may be times when you may have to eat in class. Snacks can usually be fitted into break times, but if you are feeling hypo, don’t be afraid to tell your teachers. School meals can be arranged for you (talk to the dietitian about this) or you may take packed lunches.
7 further information Identity discs It is a good idea to wear an identity bracelet or necklace. This should contain information about you; your name, address, telephone number, hospital clinic etc. If you have an accident, it’s important that other people know that you have diabetes. The S.O.S. Talisman™ or Medic Alert® discs are easily available, and identity cards can also be carried. Ask your diabetes team for more information. If your parents are receiving Disability Living Allowance (see page 41), you may be eligible to get a free identity bracelet from ‘Medic Alert®’, (although you may be asked to provide a small donation to the charity). Ask your diabetes specialist nurse for more details.
Holidays No problem! With a little planning you can travel wherever you wish. If you are planning long distance travel, don’t let crossing time zones put you off, discuss this with the diabetes team in advance. If you are troubled by travel sickness it may be a good idea to take a motion sickness tablet before the journey. If you vomit then you should try to make up the lost carbohydrate. Always carry appropriate snacks and glucose tablets. Travel tips • Carry your diabetes equipment in your hand luggage (suitcases can go missing). It is a good idea to have two lots of equipment in two separate pieces of hand luggage, so that if one goes missing, you will still have everything you need. 36
• Take extra food and snacks in your hand luggage too. • Take extra insulin with you in case you break a cartridge/vial. You should also take extras of all your diabetes kit, including needles, lancets, blood glucose monitoring strips etc. • When travelling abroad, it is advisable to obtain a letter from your diabetes team to confirm your diagnosis and therefore, allow you to carry your medical equipment with you. • When flying, insulin should be kept in your hand luggage as the temperature in the hold may drop to below freezing. • If you are going to a hot country, store your insulin in a fridge or a cool bag with ice packs. • Sugar-free drinks may be difficult to get abroad. Sodastream® sugarfree concentrates mixed with bottled fizzy water make a refreshing drink. The concentrates can be carried in small plastic bottles. • On arrival make a note of where the nearest doctor and hospital are situated. • Take your GlucaGen® injection with you. • Make sure you are covered by some health insurance. In an EEC country you should have the appropriate form for free treatment. A European Health Insurance Card (EHIC) application form is available from the Post Office, online or by telephone. • Use high factor sun cream and a hat to prevent sunstroke and dehydration. • You may use more energy on holiday if you are very active, so take extra carbohydrate or reduce your insulin as necessary. Blood glucose tests will guide you. There are useful leaflets available about travelling abroad that you can obtain from your diabetes specialist nurse. Finally, relax and have a good holiday! If you are flying, always check the latest guidelines on hand luggage with the airline before you travel. 37
7 further information
Growing up Changing schools Moving up to secondary school is an exciting and unpredictable time a new routine, new subjects, new friends - and you may not want everyone to know about your diabetes. You will need to take more responsibility for your diabetes as one teacher will not be responsible for you in the same way as before. It may be helpful to tell a few people - such as your form teacher, PE teachers and the school nurse - about your diabetes. It can also help if close friends and classmates know, in case you feel unwell, or have to eat a snack during lessons. Try not to feel self-conscious about your diabetes - it’s worth remembering that other children may have things they don’t want broadcasting either.
Puberty and beyond Growth spurts and hormonal changes can have quite an effect on your blood glucose control - and your attitude to diabetes. It is genuinely harder to control diabetes through puberty, and added to this, you may begin to feel resentful about eating healthily and testing regularly. Sleeping in late and changes in diet can also disrupt a previously well-controlled regime. There are things you can do to give yourself (and your parents) more peace of mind, so that you can join in everyday activities with your friends. For example, make sure your friends know about diabetes and if you can, carry a mobile phone (and keep it on!). Don’t forget about your diabetes while you are out enjoying yourself. As you grow up, you naturally want to become more independent and less restricted by your parents’ rules. You may be allowed more flexibility if you can demonstrate a mature and responsible attitude to your diabetes. You can’t just forget about good diabetes control (even if there are times when you would like to) – it’s just as important as ever. After all, the better you can look after yourself now, the better equipped you’ll be when you are ready to leave home later on. Both boys and girls with diabetes will develop normally and there is no reason why you should not look forward to getting married and starting your own family one day.
Insulin pump therapy PARENTS’ NOTE: Insulin pumps have the potential to help stabilise blood glucose levels and increase the level of flexibility that you have in dosing insulin to meet your child’s needs. Pumps deliver insulin on command throughout the day and night in order to better match insulin requirements. The benefits of insulin pump therapy may be the following: • May improve blood glucose control • Background (basal) insulin can be programmed to match individual needs night and day • Increased flexibility around insulin dosing to suit your child’s lifestyle requirements • Instead of injecting with every meal, you can just command the pump to deliver your calculated insulin dose • Bolus advisors are now available to help you or your child calculate the right amount of insulin to be delivered. Although insulin pumps may be a great alternative to pen injections and offer a more spontaneous lifestyle and improved control for many users, the decision to use an insulin pump should be considered carefully. As a starting point you should speak to your diabetes specialist nurse to check whether your child meets the funding criteria and/or may benefit from pump therapy. (see NICE guidelines p.44) If you require more information about the Accu-Chek range of pump solutions please contact us on Freephone 0800 731 2291 (Ireland 1800 88 2351) or visit our website www.accu-chek.co.uk or www.accu-chek.ie
The Disability Living Allowance PARENTS’ NOTE: Parents of children with diabetes (up to the age of 16 yrs) are eligible to apply for this benefit. Application forms can be obtained from the Department of Work and Pensions (Tel. 0800 882 200).
Diabetes Ireland 19 Northwood House Northwood Business Campus Santry Dublin 9 Tel: 01 8428118 www.diabetes.ie [email protected]
Accu-Chek products and services To find out about the range of diabetes information booklets, blood glucose meters and finger pricking devices available from Roche Diagnostics, call the Accu-Chek customer careline* on: Tel. 0800 701000 (UK) Tel. 1 800 709 600 (Ireland) or visit www.accu-chek.co.uk / www.accu-chek.ie An interactive version of this booklet is available on the Accu-Chek website for children with diabetes kids.accu-chek.co.uk kids.accu-chek.ie *To improve the quality of your service, calls received or made by Roche Diagnostics may be recorded.
7 further information Further reading Carbs and Cals A visual guide to Carbohydrate Counting and Calorie Counting for people with Diabetes Chello Publishing Limited, 2010 Childhood and Adolescent Diabetes Edited by Dr Simon Court and Dr Bill Lamb. Wiley and Son. 1997 Diabetes at your fingertips By P. Sonksen, Dr C. Fox, S. Judd. Class Publishing 2003 Type 1 Diabetes in Children, Adolescents and Young Adults (2nd Edition) By Dr Ragnar Hanas, Class Publishing, London 2004 ‘When your child has diabetes, what care to expect’, Diabetes UK publication (see www.diabetes.org.uk) NICE Guidelines NICE guideline Document CG15 - Type 1 diabetes in children and young people, April 2010. (www.nice.org.uk/guidance/CG15) NICE guideline TA151 Diabetes - insulin pump therapy guidance (http://guidance.nice.org.uk/TA151/Guidance) Juvenile Diabetes Research Foundation see www.jdrf.org.uk
7 see page
8 where can I find out about Annual review Blood glucose tests Carbohydrate Exercise Food groups Glycaemic index HbA1c Holidays Honeymoon Period Hyperglycaemia Hypoglycaemia Illness Injection sites Insulin
Page 31 17 12 28 10 13 30 36 5 22 18 26 8 6
where can I find out about Insulin injections Insulin pens Insulin pumps Ketoacidosis Ketones Meals and snacks Pancreas School Sick days Travel Type 1 diabetes Type 2 diabetes
Page 5 7 41 25 24 10 3 35 26 36 4 5
Originally written by the Newcastle-upon-Tyne Paediatric Diabetes Teams. Edited by the Paediatric Diabetes Nursing team at University Hospital of Wales, Cardiff with input from the diabetes specialist nurses at Northampton Heartlands PCT. 47
This educational tool and more is on our website for children:
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