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What is type 1 diabetes?

A guide for parents of newly diagnosed children

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With you all the way is a paediatric support programme created by Novo Nordisk, providing educational materials for healthcare professionals, children and young people with type 1 diabetes, and their parents.

This material has been reviewed by a panel of experts: ■ Lead Diabetes Specialist Nurse – Nicola Lewis, UK ■ Paediatric Endocrinologist – Dr. Nandu Thalange, UK

Changing Diabetes® is a global commitment by Novo Nordisk for improving conditions for the millions of people who live with diabetes around the world today, and for those who are at risk of developing diabetes tomorrow.

This information is not designed to replace the advice of a healthcare professional. Please consult your diabetes care team if you have any questions or concerns about your child’s diabetes.

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The diagnosisType 1 diabetes is a life-changing diagnosis for both you and your child and finding out that your child has the condition can be both distressing and challenging. In addition to the emotional impact of type 1 diabetes, there are a number of practical issues that you need to get to grips with. However, by doing the right things, diabetes doesn’t need to limit your child’s life or future.

We hope the information in this booklet will answer some of the questions you may have about type 1 diabetes and how to care for your child.

CAMERON HUBBARDCameron has type 1 diabetes

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Coming to terms with your child’s diagnosisYour child’s diagnosis may have happened very quickly, or you may have suspected something was wrong for some time. It probably came as a shock to you – there is a lot of information to take in and strong emotions to deal with.

It is common for parents of children with diabetes to feel stressed, angry, upset or even guilty. This is completely normal and you are not alone.

KELLY HECTOR Kelly has type 1 diabetes

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It is important to remember that:IT’S NOT YOUR FAULTThere is nothing you could have done to prevent your child from getting type 1 diabetes. It is not because you have done something wrong, such as allowing them to eat too many sweets.

Although type 1 diabetes is not hereditary, some people are at increased risk of developing autoimmune diseases, such as type 1 diabetes.

TYPE 1 DIABETES IS MANAGEABLETreatments are available that can help your child manage their diabetes and lead a normal life.

SUPPORT IS AVAILABLEYour child’s diabetes care team are there to help, and resources are available to help you and your child manage their diabetes with confidence as they grow up and develop.

DON’T BE AFRAID TO ASK FOR HELPYou may require support just as your child does. Speaking to friends or family can make things easier. It may also help to talk to other parents who are in the same situation, and may understand how you are feeling. Patient support groups, online forums and social media can help you to make contact with other parents. Ask your diabetes care team about local groups. Examples of reliable patient websites are listed below.

EXAMPLES OF RESOURCES:■ www.childrenwithdiabetes.com/uk■ www.diabetes.org.uk/children-and-

diabetes■ www.jdrf.org.uk/my-child-lives-with-

type-1-diabetes■ www.nhs.uk/Livewell/Diabetes/Pages/

Diabetesandyourchild.aspx

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The stomach changes food into glucose

The pancreas makes little or no insulin

Glucose enters the bloodstream

4 Little or no insulin enters the bloodstream

This information is not designed to replace the advice of a healthcare professional. Please consult your diabetes care team if you have any questions or concerns about your child’s condition. 5 Glucose builds up

in the bloodstream

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What is diabetes?Insulin is a hormone that is made by beta cells in the pancreas. It is essential to life – without it, blood glucose rises uncontrollably. Insulin works by helping the liver, muscles and fat regulate glucose levels in the bloodstream. There are several different types of diabetes, but all of them result from being unable to make enough insulin, either because of loss of beta cells, or ‘resistance’ to insulin, or a combination of these two factors.

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Type 1 diabetesIs known as an autoimmune disorder – this means that your child’s immune system is destroying the beta cells that make insulin in the pancreas. By the time type 1 diabetes develops, 80–90% of the beta cells have been destroyed.

This lack of insulin results in high blood glucose, also known as hyperglycaemia (or a hyper).

It is important to remember that the pancreas has many other functions as well as the production of insulin. In type 1 diabetes the other functions are usually working normally. It is only insulin production that is affected.

Type 2 diabetesOccurs either when the pancreas does not produce enough insulin to maintain a normal blood glucose level, or when the body is unable to effectively use the insulin that the pancreas is producing (‘insulin resistance‘), causing hyperglycaemia.

This type of diabetes is usually (but not always) associated with being overweight and is more common in older people and in certain ethnic groups, such as people from the Indian sub-continent, Africa or the Caribbean.

Type 2 diabetes is rare in children, although numbers are growing as the number of children with weight problems increases. It is a progressive condition, but at first can often be managed by healthy eating and exercise. Insulin therapy is usually not essential in the first few years, and other medications (tablets or injections) are usually effective at controlling blood glucose. However, ultimately, most people with type 2 diabetes need insulin or other blood-glucose-lowering treatments as well.

ELOUISE BARRETT Elouise has type 1 diabetes

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How common is diabetes?

According to the World Health Organization, around

people throughout the world have diabetes.

387 million

childrenType 1 diabetes is much more commonly found in

than type 2 diabetes.

There are around 31,000 children and young people with diabetes in the UK.

of all patients with diabetes have type 2 diabetes with most of the remainder having type 1 diabetes.

Over90%

3.9 million

The number of people living with diabetes in the UK is

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Excessive thirst, including waking at night to drink

A fruit-like smell (ketones) – often

described as similar to the smell of nail polish remover or pear drops

Abdominal pain and vomiting

Disturbance of normal breathing

(deep-sighing breathing)

Irritability, drowsiness or, in

worst cases, coma

Frequent urination (including bedwetting)

Urinary tract infection, thrush, and other skin infections

Excessive weight loss over a short period

of time, for no apparent reason

Progressive tiredness and weakness

Key symptoms of type 1 diabetes:

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Managing your child’s diabetesTREATMENT WITH INSULINType 1 diabetes is due to insulin deficiency, and must be treated with insulin given by injections or an insulin pump.

Insulin is needed all the time, even when you are asleep. If your child is on insulin injections, multiple injections are needed every day to maintain blood glucose control. Your child will usually be given two kinds of insulin, a basal insulin once or twice daily and bolus insulin with meals and snacks.

Basal insulinBasal (or background) insulin keeps blood glucose levels under control between meals and overnight. Depending on the kind of insulin your child has, the insulin may be mixed with another chemical to slow down its absorption or, more commonly, the structure has been chemically altered. See ‘long-acting insulin analogue’ and ‘medium / long-acting insulin’.

ELOUISE BARRETT Elouise has type 1 diabetes

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JACK EDWARDS Jack has type 1 diabetes

Long-acting insulin analogueAbout half the insulin our bodies require is to control blood glucose levels, even when we are not eating. We call this basal insulin. Long-acting insulin analogues are genetically modified forms of insulin designed to be more predictable and stable. They are injected once or twice a day and keep glucose levels normal between meals and overnight. It is best to inject these at the same time every day. See ‘basal insulin’.

Medium/long-acting insulinThis type of insulin, often called Neutral Protamine Hagedorn (NPH), can last up to around 20–24 hours and is usually given twice a day. It has a peak action of up to 12 hours after injection. See ‘basal insulin’.

Bolus insulinTo keep blood glucose levels under control after eating, bolus insulin is taken with meals. Bolus insulin is short-acting human insulin or a rapid-acting analogue as it has to act very quickly after food is eaten. See ‘rapid-acting analogue’ and ‘short-acting human insulin’.

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Rapid-acting analogue This type of insulin is fast-acting, with a peak action of approximately 1–2 hours after injection, and lasts for around 3–4 hours. It is typically given around mealtimes to help manage blood glucose levels. See ‘bolus insulin’.

Short-acting human insulinThis is also sometimes called ‘regular’ or ‘neutral’ insulin and is usually taken 15–45 minutes before a meal and lasts for around 6–8 hours, with peak action at around 2–4 hours after injection. See ‘bolus insulin’.

Pre-mixed insulinA mixture of a rapid-acting analogue or short-acting human insulin and a long-acting analogue or medium/long-acting insulin with a peak action of 2–8 hours, usually injected before breakfast and evening meals. This kind of insulin is no longer recommended for general use in children.

Millimoles per mole (mmol/mol) and millimoles per litre (mmol/l)The units of measure for HbA1c.

Pre-filled insulin pen This type of pen comes with the insulin already in it. These pens are disposed of when the insulin has expired (30–56 days, depending on the type of insulin), or all the insulin has been used.

Durable insulin pen This type of pen requires a new cartridge to be inserted when the insulin has expired (30–56 days, depending on the type of insulin) or all the insulin has been used.

INJECTING INSULIN Before you leave the hospital, you and your child (if old enough) must know how to safely give their insulin. You will be shown what to do by the medical and/or nursing staff.

INJECTION SITES The most common places to inject insulin are the legs, tummy, buttocks and thighs. Your diabetes care team will advise when and where the injections should be done.

Insulin is absorbed more or less quickly, depending on the site it is injected into. It enters the bloodstream more quickly if it is injected in the tummy and more slowly if injected into the buttocks or thighs.

It is also important to rotate the site of the injections as administering the insulin too often in one place can cause bruising, pain, and extra fat deposits to form in that area, which stop insulin being absorbed properly.

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INSULIN PUMPSSome children are offered an insulin pump if your diabetes care team think that it may suit them better than injections.

An insulin pump is a small device; smaller than a pack of cards. It delivers a steady flow of rapid-acting insulin continuously.

Patients on insulin pumps only have one kind of insulin in their pump – bolus insulin – as the pump delivers a small amount of insulin all the time, with extra needed for meals and snacks.

This information is not designed to replace the advice of a healthcare professional. Please consult your diabetes care team if you have any questions or concerns about your child’s condition.

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Monitoring blood glucose levelsThe monitoring of blood glucose is done using a blood glucose meter and test strips. You obtain a drop of blood by pricking your child’s finger and apply the blood onto a testing strip. The test strip is then inserted into the meter, which will give you a blood glucose reading.

It is crucial to monitor your child’s glucose levels regularly – at least 5 times daily is recommended, and 7–10 tests daily is ideal. Depending on your child’s age, they may feel comfortable monitoring their own blood glucose levels. Alternatively, they may be too young or prefer you to do it for them at least at first. It is important not to put too much responsibility on children – even teenagers – as all children need support and help with diabetes, especially at the beginning.

Carbohydrate-containing food and drink increases blood glucose levels, whereas insulin and exercise lowers it. Before exercise, children will often need a modest carbohydrate snack and/or a reduction in their insulin dose, particularly for very strenuous exercise like swimming or football. Doing this helps keep blood glucose levels at a safe level – to help prevent hypos.

Your diabetes care team will guide you on how to manage diabetes in tandem with sport, or other activities.

Monitoring blood glucose allows you to keep your child’s glucose level as close to normal as possible. In the long-run, keeping blood glucose levels near-normal prevents the development of long-term complications of diabetes. Your child’s glucose level, at any point in time, will allow you take the correct action and to adjust insulin doses and carbohydrate intake accordingly. It also shows you how physical activity and the foods your child eats are affecting their glucose levels.

Continuous glucose monitoringSome children – especially very young children, or those experiencing unpredictable hypos – may be offered a continuous glucose monitor (CGM). These measure glucose under the skin, continually, and alarm if the glucose is out of range. They sense glucose through a tiny electrode inserted through the skin. The electrode is connected to a small transmitter which sends the results to a reader, or mobile phone. The electrode is worn for 5–7 days, or more. These monitors require regular blood glucose checks (usually twice a day) to make sure they are reading correctly.

Other systems for measuring glucose without the need for regular blood checks are available for people to buy, but are not currently available through the NHS.

Whichever method you are using to check glucose levels, it is important that you, your child (if they are old enough), and other carers, know how to use it and to take the right steps to correct high or low blood glucose. Your diabetes care team will help you to understand everything you need to know.

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What is a ‘good’ reading?Ideally you should be aiming to achieve the following long-term blood glucose targets, although your diabetes care team may suggest different targets to suit individual situations:

■ On waking, levels should be between 4–7 mmol/l

■ Before a meal, levels should be between 4–7 mmol/l

■ After meals levels, should be between 5–9 mmol/l

■ For older teenagers, when driving, levels should be at least 5 mmol/l

■ Before sport, or other physical activity, aim for a glucose level around 7–10 mmol/l

High or low blood glucose affects concentration, well-being and school achievement, as well as increasing the risk of long-term diabetes complications, so it is crucial to get blood glucose levels as close to normal, (4–7 mmol/l), as possible.

These targets are difficult to achieve and no-one has perfect control all the time, particularly when they first start using insulin. There will be times – for instance during illness – when this is more difficult.

There can be conflict between children and their parents or other carers about blood glucose targets. If you struggle to achieve target levels, your diabetes care team will be able to help.

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Nervousness

Symptoms of low blood glucose

include:

SleepinessSweating

Dizziness or light-headedness

Lip tingling

Grumpiness

Confusion

Hunger

Shakiness

Recognising signs of hypoglycaemia (or hypos) Low blood glucose is also commonly referred to as a hypo. Episodes of low blood glucose are caused by an imbalance between factors which reduce blood glucose levels (such as insulin and physical activity), and factors that raise blood glucose levels (such as intake of food and drinks).

It is important that you, your family and any other people involved in your child’s care learn to recognise the specific signs your child shows when they are experiencing a hypo. This is particularly important in children who are too young to clearly communicate how they are feeling.

You may want to encourage your child to use simple words to describe how they are feeling i.e. ‘shaky’ or ‘fuzzy’. Speak to a member of your diabetes care team about the best way to communicate with your child about diabetes and symptoms.

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Managing hypos Your child will be given a diabetes management plan which will include advice on managing hypos. The treatment for a hypo consists of a small amount of rapid-acting (high GI) carbohydrate given as a drink, glucose tablets, or similar. Even if you detect a hypo at a mealtime, it is important to treat the hypo with rapid-acting carbohydrate before eating, as glucose may still be falling.

It is essential to carry fast-acting (high GI) carbohydrate with you e.g. oral glucose gel, glucose tablets, fruit juice or sugar-coated sweets with you in case of emergencies. Your child’s school health plan should spell out their hypo treatment, and they will need appropriate supplies at school.

Your child’s diabetes care team should also supply you with an intramuscular glucagon kit for use in case of a hypoglycaemic emergency if your child is unable to swallow glucose (for instance if they are very uncooperative, unconscious or having a seizure). Your diabetes care team will explain how and when to use it. Ambulance crews carry glucagon for emergency use, if you are unsure what to do, or don’t have your glucagon kit with you.

MITTHILA HAQ Mitthila has type 1 diabetes

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Nocturnal hypoglycaemia (night-time hypos)Hypos at night can be especially worrying. Signs that your child may be experiencing night-time hypos include:

■ Sweating – waking up with damp night clothes/sheets (though this may be normal, especially in young children)

■ Waking up groggy – headache/feeling tired, irritability and confusion upon waking

■ Poor/disturbed sleep – crying out during the night, or nightmares

■ Unexpected low or high blood glucose reading upon waking

If you suspect night-time hypos, it is a good idea to talk to your diabetes care team who may recommend that you test your child’s blood glucose during the night. You might be given a CGM for a few days (also called a “diagnostic Continuous Glucose Monitoring (CGM)”) in order to work out what is happening.

In general, it is a good idea to check blood glucose during the night whenever your child has had an increase in insulin dose in the evening, or is getting any of the symptoms above. Remember, there may be other causes for these symptoms. Testing will help to identify what the problem is.

P.J. PIMPINELLIP.J. has type 1 diabetes

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Night-time hypos can be caused by:

■ High levels of physical activity during the previous day, (e.g. after sports’ day, or visiting a theme park)

■ Recovery from illness ■ Poor food intake at evening meal ■ Too much long-acting insulin

Note that the right dose of long-acting insulin will keep blood glucose levels steady – your blood glucose level should neither rise nor fall significantly overnight.

Night-time hypos may be prevented by:

■ Giving your child a small snack before they go to bed (e.g. a complex carbohydrate, long-acting snack such as a wheat cereal or porridge)

■ Reducing the long-acting insulin dose, particularly after unaccustomed physical activity

Initially, you should consult your diabetes care team before changing your child’s insulin dose; later you will become familiar with doing this yourself.

HyperglycaemiaHyperglycaemia happens when blood glucose levels are too high – above 7 mmol/l before a meal and above 9 mmol/l between 2–3 hours after a meal. There are several reasons why this may happen. It may be due to:

■ A missed dose of insulin ■ Mismatching food intake and insulin

dose at a mealtime■ Emotional stress or excitement■ Illness■ Over-treating a hypo■ After a night-time hypo

If your child is experiencing hyperglycaemia, they may pass more urine than normal – especially at night – be extremely thirsty, complain of headaches or be very tired – the same symptoms as people get before diagnosis. If your child has any of these symptoms, and their blood glucose is high, it is important to test their blood for ketones using blood ketone testing strips and a meter. If your child has abdominal pain and/or vomiting, check blood ketones, regardless of the glucose level.

A ketone level above 1.0 is high, and if above 3.0 may indicate the development of diabetic ketoacidosis – a medical emergency. If the result is positive, seek help right away. Your diabetes care team will advise you what to do in an emergency.

Managing hyperglycaemiaYour child’s diabetes management plan will state how to manage hyperglycaemia. This may include drinking extra (sugar-free) fluids and you may need to give your child extra insulin. If your child is very ill, particularly if they are vomiting, you should contact your diabetes care team immediately.

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When your child is unwellWhen your child is ill, they are at increased risk of a serious acute complication of diabetes, called diabetic ketoacidosis. During illness, if glucose levels are high, or if your child has abdominal pain and/or vomiting, it is vital to check blood ketone levels, using blood ketone testing strips and a meter. Their blood glucose level should be checked regularly (at least every 2–4 hours, including at night) and they should continue to eat and drink, as best they can. Use frequent sips of sugar-containing drinks, and small snacks if they are struggling to keep things down. If your child is unable to eat or drink, they must be taken to hospital.

HbA1c

Long-term diabetes control is checked by a blood test which measures glycated haemoglobin, also called HbA1c. This test measures the amount of glucose attached to haemoglobin, and is an indicator of glucose levels over a two to three month period. Keeping your HbA1c level below 48 mmol/mol (6.5%) has been scientifically proven to greatly reduce the risk of long-term diabetes complications.

TRINITY ALFAROTrinity has type 1 diabetes

This information is not designed to replace the advice of a healthcare professional. Please consult your diabetes care team if you have any questions or concerns about your child’s condition.

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Mealtimes At the time of diagnosis, your diabetes care team should provide you with some guidance around management of your child’s mealtimes.

Food intake must be balanced with insulin doses in order to avoid low blood glucose levels or high blood glucose levels. Children with diabetes need a healthy, well-balanced diet.

When your child is first diagnosed with type 1 diabetes, managing mealtimes may seem complicated – but it will get easier to manage over time. You will soon learn about the effects of specific foods and physical activity on your child’s blood glucose levels. It helps to keep a food diary to track your child’s meals, exercise and blood glucose levels.

Your dietitian will help you with specific meal issues, including carbohydrate-counting, managing fussy eating, exercise snacks etc.

A balanced diet Children with type 1 diabetes have the same basic nutritional requirements as children without diabetes. You should try and aim for a balanced diet including fat, protein and carbohydrates (including at least 5 portions of fruit and vegetables per day). Carbohydrates are all digested to simple sugars, and directly affect blood glucose levels. Fat and protein influence glucose levels indirectly.

Generally, children with diabetes are advised to eat three main meals each day.

PROTEINE.g. Meat, fish, eggs, pulses (e.g. lentils or beans), nuts and dairy.

Although not necessary for a healthy diet, many children like to have snacks between meals – you should discuss the nutritional composition and timing of snacks with your child’s diabetes care team. Depending on the amount and carbohydrate content of the snack, it may be necessary to have an insulin injection, to keep glucose levels in range.

Having diabetes doesn’t mean your child can’t eat any sweets as treats, but only in moderation, along with appropriate insulin, if necessary.

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FATE.g. Olive oil, rapeseed oil and avocado (unsaturated fats, eat more of), and fats from meat and dairy products (saturated fats, eat less of).

FRUIT AND VEGETABLESE.g. Apples, oranges, green beans and peppers.

CARBOHYDRATEE.g. Bread, pasta, cereals, potatoes, rice, chapatis, sweet potato, plantain.

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Talking to people about your child’s diabetesTALKING TO YOUR CHILD Growing up with type 1 diabetes is hard, and your child may find it difficult to express how they are feeling. Every child with diabetes finds it a struggle at times. Encourage your child to be open with you and their friends about how they are feeling. Your child may also find it helps to talk to other children facing the same challenges. Patient support groups can help you make contact with other parents and children in the same position. Ask your diabetes care team about local groups.

Children who are a little older may have a better understanding of their condition and understand the words associated with their condition and treatment. As they get older, they will be able to self-inject and take a more active role in managing their diabetes. However, it’s important to realise that even a fifteen-year-old is still very young and still needs your support.

If you are worried about how your child is coping with diabetes, it is better to tackle problems sooner rather than later. A child psychologist is a key member of the diabetes care team, and can help with the emotional issues. Eating disorders and depression are common in teenagers, and need specialist help from mental health services.

TALKING TO OTHER PEOPLE It is important that your child receives good support to help them manage their diabetes. Because you can’t be with your child all the time, you will need to ask other adults to help your child manage their condition, especially when they are young.

When your child is newly diagnosed with diabetes, there will be a lot of people that you will need to tell – family, friends, schools and clubs. As your child grows, changes schools, makes new friends and takes up new activities, there will be many more people that you will have to talk to about diabetes. Having a close friend who understands diabetes can be a big help.

Although nearly everyone has heard of diabetes, not many really know what it means. It’s important that you have a thorough understanding of diabetes – and your diabetes care team can help you. Make sure that you talk to them using language that is appropriate for their age group and understanding – for instance, a child is unlikely to understand the word ‘hypoglycaemia’ but may understand what low blood sugar means.

Before you leave your child in the care of another adult, always make sure that they know that your child has diabetes and what they will need to do to help them manage it. Tell them about any warning signs they need to be aware of and what to do in case of a hypo or an emergency. Let them know if your child uses words such as ‘shaky’ or ‘fuzzy’ to describe how they feel when experiencing hypos.

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Do not be afraid to ask for supportCaring for a child with diabetes is hugely challenging and stressful, especially early on. Parents very commonly report chronic anxiety and stress symptoms. If parents cope very differently, it may lead to family conflict and distress. Remember, you may require support, just as your child does. You can speak to your child’s diabetes care team if you have any concerns or are having trouble coping.

This information is not designed to replace the advice of a healthcare professional. Please consult your diabetes care team if you have any questions or concerns about your child’s condition.ALEJANDRO KULICK

Alejandro has type 1 diabetes

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NOVA HOLMBERGNova has type 1 diabetes

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This information is not designed to replace the advice of a healthcare professional. Please consult your diabetes care team if you have any questions or concerns about your child’s diabetes.

This information was developed by Novo Nordisk, a global healthcare company with more than 90 years of innovation and leadership in diabetes care. This heritage has given us experience and capabilities that also enable us to help people defeat other serious chronic conditions: haemophilia, growth disorders and obesity.

Headquartered in Denmark, Novo Nordisk employs approximately 40,300 people in 75 countries and markets its products in more than 180 countries.

For more information about Novo Nordisk, please visit www.novonordisk.co.uk

Other materials from the With you all the way campaign can be accessed via www.with-you-all-the-way.co.uk

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