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Information for Families of Children and Young People with Diabetes

Children’s Services Colchester Hospital

Children’s Ward Tel: 01206 746208 or 746209

Children’s Elective Care Unit Tel: 01206 744237

Your diabetes team

Your diabetes team:

Dr Nicola Cackett Consultant Paediatrician, Dr Rajeev Shinkar Consultant Paediatrician

Natalie Jordan Lead Children’s Diabetes Nurse Specialist, Stana Cantwell Children’s Diabetes Nurse Specialist

Anna Groom Lead Children’s Diabetes Dietitian Specialist, Carmen Bell Specialist Children’s Dietitian

Dr Alison Ram Clinical Psychologist

More Information

Routine enquiries: 8 am -5 pm Children’s Diabetes Nurse Specialist: 01206 742758. The dietitian can also be contacted on this number. If you get the answering machine, please leave a message and we will phone you back as soon as possible.

Email: [email protected] Appointment enquiries: 01206 742758

For urgent advice: 8am-5pm, phone the diabetes nurses: Natalie Jordan 07557 015609 Stana Cantwell 07799 861667 5pm-8am weekdays, weekends and bank holidays, call 01438 285000. Please note: this may not be a member of your own team but will be a doctor or nurse who works with children with diabetes.

If your child needs hospital admission for diabetes or you have been advised by the out-of-hours service to contact the children’s unit, please phone: Children’s Assessment Unit: 01206 746200 Children’s Ward: 01206 742152 or 742958.

Young people aged 16 years and over who require a hospital review will need to attend the hospital Emergency Department (A&E).

Diabetes is a condition that results in an increased blood glucose level (commonly called sugar) due to a lack of the hormone insulin. Insulin dependent diabetes can occur at any age but it mostly occurs in children and young adults, with a peak around pre-school and puberty. There is no definite cause but there are a variety of possible explanations, including genetic and environment factors, and viruses.

Your child has been diagnosed as having type 1 diabetes. This means that your child’s pancreas has stopped producing its own insulin and he or she will need insulin injections or an insulin pump for the rest of their life.

The pancreas has two main functions: 

1 It produces digestive juices, which allow the food we eat to be digested and absorbed by the body.

2 It produces hormones which balance the blood sugar. The most important of these are insulin and glucagon. Both of these hormones are produced in the part of the pancreas called the islets of Langerhans.

In type 1 diabetes, it is only the production of insulin that has stopped. The pancreas is still able to perform its other functions, such as enzyme and glucagon production.

Normally, we eat food and it is broken down into various forms, one of which is glucose. Glucose is needed as energy for the body to use and for growth.

When the level of blood glucose rises, such as after a meal, insulin is automatically released into the bloodstream, where it has two main effects: 1 Insulin helps glucose to get inside some cells, where it is needed immediately for energy.

2 Insulin prevents the liver from releasing any stored glucose (glycogen) into the bloodstream at that point because it is not required.

In people with diabetes, the pancreas has stopped producing insulin, so this does not happen. Instead, the glucose stays circulating in the blood, unable to be used or stored. Each time a person eats, the level grows higher. Eventually the body starts to use other sources of energy and breaks down the body’s store of fat.

Children will require injections of insulin every day to maintain a ‘normal’ blood glucose level. Insulin will also ensure that your child grows normally, because if glucose cannot be used, there is no energy for growth.

There are many types of insulin and new ones are being developed all the time. Most children will start on four injections of insulin a day. Your diabetes team will help you to decide what is best for your child.

We use different types of insulin at different times of the day in order to maximise blood glucose control. Some insulin preparations are designed to work for up to four or five hours, while others work for up to 24 hours. Ask your diabetes team about the insulin your child has been prescribed and how it is expected to work.

Some children and young people will be offered an insulin pump in order to maximise control of blood glucose levels.

The pump administers insulin continuously through a special cannula inserted below the skin. Insulin pumps will be discussed at clinic appointments as part of your ongoing care.

 The most suitable injection sites are: 

  • thighs: front and outer areas of the thighs (slow absorption) 
  • abdomen: level with the belly button, avoiding above and below it and the areas towards the hips (fast absorption) 
  • buttocks: upper outer areas of the buttocks (slow absorption) 
  • arms: upper and outer areas of the arms (medium absorption).

The injection should be into the subcutaneous fat layer to allow a steady rate of absorption. The delivery of insulin into the muscle will increase the rate of insulin absorption, increase the risk of hypoglycaemia and cause more pain and discomfort.

A lifted skin fold technique should be used whenever using a needle greater than 4 mm in length (or all the time in infants or those with little subcutaneous tissue). The lifted skin fold should not be squeezed tightly so that it causes pain or skin blanching. The needle should be inserted straight in, all the way to the end. Your diabetes nurse will demonstrate this technique and will advise the correct needle length for your child.

Ideally, longer-acting insulin should be injected into larger subcutaneous areas such as the abdomen or buttocks.

Each site has a different absorption time so it is important to keep a consistent site for each time of the day, for example pre-breakfast insulin should always be given in the same site but in different areas of that site.

Heat, blood flow and use of the limb will also affect the absorption rate of insulin.

Site rotation should be encouraged at every opportunity, both using different sites to inject insulin, but also rotation within those sites.

It is important to rotate the injection sites used to prevent hard or lumpy areas developing and causing problems with the absorption of insulin. This is known as lipohypertrophy and will cause your child to have erratic blood glucose levels for as long as those areas are used. Areas of lipohypertrophy should be avoided until the tissue has returned to normal, which may take months.

Do not leave a needle attached to the insulin pen in between injections because there can be some slight leakage from the insulin cartridge during the course of the month it is in use, which is caused by changes of temperature. Air may also enter the insulin cartridge.

Never use a blunt needle and remember to use a new needle every time. Insulin pen needles are designed to be used only once, so used needles need to be disposed of immediately afterwards. Re-using needles can lead to: 

  • bruising 
  • bleeding additional trauma, leading to lipohypertrophy or lipodystrophy (loss of body fat tissue) 
  • increased risk of infection.

At home, store the insulin at the bottom of your fridge or in a door pocket of the fridge but ensure it is at room temperature before injecting. Insulin injected straight from the fridge is very painful.

If you are using insulin via a pen injector, the cartridge being used in the pen can be kept out of the fridge for one month. Do not keep your pen in the fridge because the cold may damage its mechanism.

Blood glucose monitoring is the most accurate way to determine how good diabetes control is when you are at home. We would like your child tested five times a day: before main meals, before bed and at other points in the day, depending on individual requirements. Testing gives us a good idea about how he or she is progressing and what adjustments to the insulin dose are needed, if any.

We are aiming for blood glucose levels of: 

  • 4-7 mmols/L before meals 
  • 5-7 mmols/L before bed.

Blood glucose levels outside of these ranges should be discussed with the diabetes team.

  • Wash and dry your hands thoroughly before beginning the test 
  • Ensure that your chosen site is warm, because it will bleed more easily
  • Ensure that you have a sufficient sample of blood before attempting to put it on the strip
  • Follow the specific instructions included with your particular meter.





Some individuals are also choosing to have continuous glucose monitoring (CGM) or flash glucose monitoring.

CGM is a small device that is inserted just under the skin and measures glucose continuously through the day and night. The device allows close monitoring of glucose and alerts to high and low levels allowing action to be taken.

Flash glucose monitoring is very similar with levels shown on scanning sensors but alerts not currently provided.

All sharps should be disposed of into a sharps bin. These are available on prescription and can be dispensed, along with medication, by the GP.

Disposal of full sharps bins is the responsibility of the local council. Details of local clinical waste provision can be found by visiting the council website or contacting the helpline.

Hypoglycaemia means low blood glucose. It is often called a ‘hypo’ and is defined as a blood glucose level below 4 mmols/L. Some people do not feel the symptoms of a hypo at this level but it is important to treat any levels below 4 mmols/L.

Further information is available in a hypoglycaemia patient information leaflet.

Hyperglycaemia or ‘hyper’ is when the blood glucose level is high, which means a level outside the target range. It is important to maintain optimum blood glucose control to prevent long-term damage to the body, to maintain health and to prevent diabetic ketoacidosis.

Further information is available in a hyperglycaemia patient information leaflet.

The diet for children and young people with diabetes should be no different to that for any other child following a healthy, balanced diet. It is a diet that can be enjoyed by your family and friends. From diagnosis you will be taught carbohydrate awareness and carbohydrate counting. This is when you adjust your mealtime insulin dose based on the carbohydrate content of your food. The dietitian will discuss this further with you.

Any exercise is to be encouraged, for all of us, especially young people with diabetes. It is recommended that children and young people undertake 30-60 minutes of exercise a day.

Things to consider when exercising 

  • Extra food may be needed before, during or after exercise when more activity than than usual takes place, such as playing football or swimming. This will depend on pre- exercise blood glucose levels, the type of activity and the intensity and duration of exercise.
  • Each child’s needs must be treated on an individual basis, taking into account their blood glucose readings and their own blood glucose response to exercise.
  • If pre-exercise blood glucose levels are < 7 mmols/L an additional carbohydrate snack will be required before participation.
  • If pre-exercise blood glucose levels are13 (and it is not within two hours of eating) you should consider testing for ketones. If ketones are present, do not exercise.
  • It is possible to have delayed hypoglycaemia up to 24 hours after exercise, so monitoring is key.

 

In addition to regular appointments with the diabetes team, we advise you to arrange the following health checks: 

  • eye examinations by an optician every two years 
  • regular dental examinations.

 

In addition to current immunisation schedules, the Department of Health’s Green Book recommends the following: 

  • annual immunisation against flu for children and young people with diabetes over the age of six months 
  • immunisation against pneumococcal infection for children and young people with diabetes who need insulin or oral hypoglycaemic medicines. 

You can obtain further information about immunisations from your GP.

Being diagnosed with diabetes can feel frightening and confusing. Some children, young people and their families cope well with the changes that diabetes brings, while others find these changes overwhelming. In addition, coping with diabetes can make day-to-day problems in life seem harder to manage.

Please feel free to discuss with your diabetes team any worries or concerns you, your child or family may have. A clinical psychologist is an integral part of the diabetes team. If you or your child has thoughts or feelings you would like to discuss with a clinical psychologist, either now or in the future, your diabetes team can arrange an appointment.

This is a benefit that you may be able to claim for your child, which you should apply for as soon as possible because it can take a while to process.

A claim form is available from most large post offices or can be downloaded from https://www.gov.uk/government/publications/disability-living-allowance-for-children-claim-form Your diabetes nurse can provide you with guidance to complete the form.

Research into the causes and treatments of diabetes is ongoing. It may be possible for your child and/or family to take part in this research. If you are interested in this, please ask your diabetes team for more details.

On diagnosis we will go through the basic principles of diabetes and provide you with literature. We will show you how to check your child’s blood glucose level and teach you how to inject insulin.

When you feel confident to go home, we will discharge you and arrange to see you at home to continue this diabetes education. Initially, most families prefer this education to take place in their own home, where they feel relaxed.

Ongoing diabetes education continues on an outpatient basis. We will aim to see you or your child approximately every three months in clinic, or more often if required. We will cancel appointments only if strictly necessary.

Your child will have their weight, height and blood pressure monitored at each outpatient appointment. They will also be offered an HbA1c blood test (via finger prick) at every diabetes outpatient appointment. As well as daily blood glucose testing this is a way to help monitor diabetes management.

Target HbA1c is 48 mmols/L. Your diabetes team will explain this test further and help you identify ways to achieve this.

Once a year you will be offered an annual review. This will be explained further to you at your outpatient appointment.

You will receive a written summary of your clinic appointment with your consultant.

You will be offered support from the dietitian in the diabetes team when you are diagnosed, during clinic appointments and more regularly if you need it.

If appropriate you will be offered support from a clinical psychologist.

There is much to learn and take in about diabetes, so don’t worry if you can’t grasp it straight away. It takes most families several months. Ask any questions you may have.

That you let us know as far in advance as possible if you cannot make an appointment.

  • If a home visit has been arranged and you need to reschedule it, please let the diabetes team know as soon as possible.
  • If you have been asked in clinic to contact the diabetes team, please do so. We will endeavour to answer your call but if we are unable to do so, please leave us a message, because your call is very important to us. Alternatively, for non-urgent enquiries or advice you can e-mail the team.

 

Websites 

  • Diabetes UK www.diabetes.org.uk Diabetes UK is the largest organisation in the UK working for people with diabetes, funding research, campaigning and helping people live with the condition.
  • Juvenile Diabetes Research Foundation www.jdrf.org.uk Juvenile Diabetes Research Foundation exists to find a cure for type 1 diabetes and its complications. It is the world’s largest charitable funder of type 1 diabetes research.
  • NHS Diabetes www.diabetes.nhs.uk NHS Diabetes works to raise the quality of diabetes care in England by supporting and working with the healthcare community and people with diabetes 
  • East of England Diabetes Network www.cypdiabetesnetwork.nhs.uk The network provides regional information about diabetes care and events.

Your diabetes team can also provide you with information about local support groups which meet.

Books

‘Type 1 Diabetes in Children, Adolescents and Young Adults’ by Dr Roger Hanas ‘Diabetes Through the Looking Glass: seeing diabetes from your child’s perspective’ by Dr Rachel Besser. (A book for parents of children with diabetes.)

Support groups

www.childrenwithdiabetesuk.org – an online parent support group run by parents.

Websites 

  • Diabetes UK www.diabetes.org.uk Diabetes UK is the largest organisation in the UK working for people with diabetes, funding research, campaigning and helping people live with the condition.
  • Juvenile Diabetes Research Foundation www.jdrf.org.uk Juvenile Diabetes Research Foundation exists to find a cure for type 1 diabetes and its complications. It is the world’s largest charitable funder of type 1 diabetes research.
  • NHS Diabetes www.diabetes.nhs.uk NHS Diabetes works to raise the quality of diabetes care in England by supporting and working with the healthcare community and people with diabetes 
  • East of England Diabetes Network www.cypdiabetesnetwork.nhs.uk The network provides regional information about diabetes care and events.

Your diabetes team can also provide you with information about local support groups which meet.

Books

‘Type 1 Diabetes in Children, Adolescents and Young Adults’ by Dr Roger Hanas ‘Diabetes Through the Looking Glass: seeing diabetes from your child’s perspective’ by Dr Rachel Besser. (A book for parents of children with diabetes.)

Support groups

www.childrenwithdiabetesuk.org – an online parent support group run by parents.

Carbohydrate- one of the food groups which includes starch, sugar and /or fibre: Carbohydrate is broken down by the body into glucose, which is the body’s main source of energy.

Glucagon – this is a hormone produced by the pancreas, its function is to convert glucose that has been stored in the body as glycogen back into glucose to be used as energy.

Glucogel – this is a concentrated glucose gel that can be used to reverse hypoglycaemia.

Glycogen – excess glucose that is not immediately needed by the body for energy is stored as glycogen.

HbA1C – this is a finger-prick blood test that is offered to your child approximately every three months at their outpatient appointment. It helps you and us assess your child’s overall diabetes management.

Hyperglycaemia – this is when there is too much glucose circulating in the blood.

Hypoglycaemia – this is when the glucose circulating in the blood is too low to meet the body’s energy requirements.

Insulin – a hormone produced by the pancreas with the function of enabling glucose to enter the body’s cells, where it is used as energy.

ketones – these are by-products produced when fat is broken down by the body to use as an energy source.

To find out how to give us feedback on your visit or healthcare experience, please visit www.esneft.nhs.uk and search for ‘PALS’, or speak to a member of staff on the ward or department you are in.