Type 1 Diabetes

Diabetes is the term given to conditions where there are elevated glucose levels in the blood. There are many different types of diabetes, with the main ones being type 1, type 2 and gestational diabetes.

The reason for high blood glucose levels is different for each type of diabetes, and this is important because the treatment for each type is different. In children, the most common type of diabetes is type 1 diabetes.

What is Type 1 Diabetes?

Type 1 Diabetes is a non-preventable disease and is not caused by eating too many sugary foods. In type 1 diabetes, the body’s immune system gets confused and attacks and kills the beta cells of the pancreas, like it would a virus or bacteria when we’re sick. This is why type1 diabetes is called an autoimmune disorder. The beta cells of the pancreas are responsible for producing a hormone called insulin. Without insulin, the glucose levels in the blood rise uncontrollably and the body is not able to use it as energy.

Download the chapter 'What is diabetes?' from our Type 1 Diabetes information booklet

For kids

 

For parents

 

Treatment of Type 1 Diabetes

The treatment of type 1 diabetes involves taking over the job of the pancreas by aiming to keep blood glucose levels as close to target range as possible.

This involves balancing administration of insulin through injections or an insulin pump and with regular monitoring of blood glucose levels, diet, exercise, hormonal factors and continued learning.

Download the Insulin chapter from our Type 1 Diabetes information booklet

Blood glucose monitoring is essential to manage your child’s diabetes and there are different ways of measuring blood glucose.

This record sheet can be used for monitoring blood glucose levels.

The following resources include information on this, as well as when and how to check blood glucose levels and glucose targets.

• Download the chapter 'Glucose Monitoring' from our Type 1 Diabetes information booklet (PDF)

 

• HbA1c Health Fact (PDF)
• Know the numbers for Type 1 Diabetes (PDF) 

Glucometers

Children with type 1 diabetes must check their blood glucose levels multiple times a day. This can be done with a glucometer.

A drop of blood is obtained by pricking a fingertip and then placed on a test strip in a glucose meter (glucometer) and the glucose level is measured.

The treatment of type 1 diabetes involves taking over the job of the pancreas by aiming to keep blood glucose levels as close to target range as possible.

This involves the administration of insulin through injections or an insulin pump and regularly testing blood glucose levels by pricking a finger or using continuous glucose monitoring.

Download the Insulin chapter from our Type 1 Diabetes information booklet for more information.

This video shows you how to effectively administer insulin.

  

Insulin therapy

People who have type 1 diabetes do not produce insulin. This means that injecting insulin is a daily requirement of a child or adolescent who has type 1 diabetes.

• Managing glucose levels after meals – Health Facts (PDF 245kb)
• A guide to flexible insulin therapy for families – Health Facts (PDF 239kb)

Children and adolescents with well controlled diabetes are not more likely to become unwell compared to children without diabetes.

However, close monitoring is needed when they are unwell. Diabetes management can be complicated during times of illness due to reduced appetite or vomiting, potential presence of ketones and increased resistance to insulin.

Please refer to our guidelines for managing sick days.

Remember that you can call a diabetes educator (office hours) or the on-call consultant (after hours) if you are unsure.

Contact numbers if your child is unwell

Monday – Friday Please contact the triage nurse between the hours of 8:30am and 4:30pm for advice. Please ensure you have insulin dose information at hand.   Weekends & Public Holidays You will need to contact the Diabetes Doctor On-Call for advice using the details below. Should you need to contact the diabetes team outside of these times, please see numbers below:   6456 1111 Diabetes Educator Triage Line  8:30am – 4:30pm, Mon – Fri (excluding public holidays) Press “2” to leave a message (state your child’s first & last name, your name & phone number, and the reason for the call)   This is NOT an emergency line; however, your call will be returned as soon as possible.      6456 5993 Diabetes Doctor On-Call (Emergency Service) Weekends & public holidays: call if your child’s glucose levels are outside 4-15 mmol/L (ideally between 2 – 5pm) or  Weekdays: for urgent after-hour concerns  Leave a message and your call will be returned by a doctor Please state that your child is unwell   6456 2222 Perth Children’s Hospital – ask for the Diabetes Doctor On-Call Remember: Please leave a clear message stating: your child’s name your contact phone number the reason for your call that your child is unwell if your child has positive ketones (over 0.6) and/or if they are vomiting Your call will be returned as soon as possible; however, there can be a delay if we are experiencing a high call rate.   Please call 000 if your child is unconscious or unresponsive.

Digital technology for diabetes

There is an increasing range of devices and technology available for the treatment of young people living with type 1 diabetes.

Some examples include:

• Continuous Glucose Monitors (CGM) which allow results to be viewed remotely by parents in real time
• Insulin pump with or without CGM, including Hybrid Closed Loop systems
• Flash glucose monitoring (Libre) – approved for use in children 4 years and older in Australia
• A variety of mobile device apps which assist recording / tracking BGL and insulin doses
• Insulin pens

Continuous glucose monitoring systems (CGM)

Continuous Glucose Monitoring (CGM) is a device that measures tissue glucose levels continuously. A sensor is worn in the skin which measures tissue-glucose levels (which is different from blood glucose levels) which are then relayed to a receiver or a mobile phone and displays the levels in real time. This reduces the need for finger prick blood glucose measurements.

Since 1 April 2017, the Australian Government provides subsidised continuous glucose monitoring (CGM) products through the National Diabetes Services Scheme (NDSS) to children and young people aged under 21 years, living with type 1 diabetes.

Children and families can receive CGM and training through the PCH Diabetes Service.

The child will receive a CGM Appendix which must be attached to their School Diabetes Management and Action Plan.

Flash glucose monitoring (Libre)

Libre is a device that measures and stores information on blood glucose levels. It consists of a round sensor worn on the arm and is scanned by the associated reader device or an app loaded onto a mobile phone.

Parental distant monitoring of blood glucose

CGM devices have the ability to share the blood glucose levels to more than one mobile phone. This is popular with parents and carers of children with type 1 diabetes and is useful in allowing parents to view the blood glucose of their child when they are not with them.

The Libre has TGA (Therapeutic Goods Administration) approval for use in children aged four years and older in Australia. It is considered accurate to determine glucose levels at any given time and can be used when calculating insulin doses.

Insulin pumps

Insulin pumps are small electronic devices that deliver small amounts of rapid acting insulin to people with type 1 diabetes through a small cannula into the subcutaneous tissue.

An insulin pump is worn for 24 hours a day, but can be detached for up to two hours, e.g., to go swimming, play sport or showering.

Insulin pumps can be programmed to deliver a bolus of insulin when eating carbohydrates (called a meal bolus), and extra insulin to correct a high blood glucose level (correction bolus). The device does not test blood glucose levels and must be interacted with to give the correct level of insulin.

Insulin pumps linked to Continuous Glucose Monitoring

Some CGMs transmit glucose level readings to an insulin pump via Bluetooth. These are called hybrid closed loop systems. These systems modulate insulin delivery according to sensor glucose levels in order to improve glycaemic control and decrease the burden of diabetes management.

• Your plan for successful pumping – Health Facts (PDF)
• Interpreting Insulin pump downloads – Parent guide (patients aged <5 years) – Health Facts (PDF)
• Interpreting Insulin pump downloads – Parent guide (patients aged >5 years) – Health Facts (PDF)
• Pump failure guidelines – Health Facts (PDF)

Online learning

Insulin pump therapy

Before attending your pump workshops at PCH, please complete these online learning modules.

 

There are three modules to complete before you join us at one of the pump workshops. Please follow the step-by-step instructions to complete the modules and save or print your PDF certificate.

These courses are for PCH patients who have been directed to complete them by their clinic team. If you would like to consider insulin pump therapy, please speak to your treating team.

 

Pump brands online learning

• Medtronic
• Tandem Control IQ
• Ypsomed CamAPS
• Ominpod^® Australia

 

There is a lot of learn about how different foods affect your child’s glucose levels. Our dietitians will help you match the food your child eats and the amount of insulin that is given.

The following videos and health facts will complement the individualised dietary support your child is given from the diabetes dietitians.

Videos

• Visit the Telethon Kids Institute resource hub (external website)

Nutrition Child Health Facts

• Glucose levels: managing after meals (PDF)
• Cholesterol (PDF)
• Cholesterol: Keeping our mob healthy (PDF)
• Iron deficiency diet sheet (PDF)
• Iron deficiency diet sheet: Keeping our mob healthy (PDF)
• Glucose Solution (PDF)

Download the chapter on Emotional Adjustment to Diabetes from our Type 1 Diabetes information booklet

Centrelink Information (for under 16 years and over 16 years)

Centrelink Carer Allowance

Every child diagnosed with Type 1 Diabetes under the age of 16 years (with a family income under $250 000 per year) is eligible for Carer Allowance. This can be applied through via myGov.

On diagnosis this Carer Allowance - Medical Report for a child under 16 years form (SA426) is completed by the doctor and given to carers to follow up with Centrelink. The payment is back dated the date the form is lodged with Centrelink, not the date of diagnosis. 

Centrelink Claim for Ex-Carer Allowance (Child)

Every 16-year-old teen with type 1 diabetes whose carer is on Carer Allowance for type 1 diabetes can apply for Centrelink Claim for Ex-Carer Allowance (Child) - Health Care Card form (SS456). This does not require a medical letter and can be completed by parents and teen. This form applies for a Health Care Card in the teen’s own name if they are a full-time student 25yrs or younger and their carer previously had a health care card.

Needle Phobia

Type 1 diabetes (T1D) is a chronic condition that requires insulin injections to regulate blood sugar levels. However, many children with type 1 diabetes may develop a fear of needles, also known as needle phobia. This can make it difficult for parents and caregivers to administer the necessary insulin injections.

Here are some tips to help children with type 1 diabetes cope with needle phobia:

Distraction techniques

During insulin injections, parents or caregivers can distract the child by engaging them in a fun activity or conversation. This can help shift the child's focus away from the injection and reduce anxiety.

Desensitization

Daily insulin injections can help reduce the child’s fear of needles.

Breathing Techniques

1. Belly breath – take a deep breath in through their nose for 4 seconds, feeling their belly rise, and then slowly exhale through their mouth for 6 seconds, feeling their belly lower.
2. Straw breathing – Give the child a straw and have them take a deep breath in through their nose and exhale through the straw as is they are blowing up a balloon.
3. Counting breath – have child take a deep breath in through their nose and the slowly exhale while counting to 5. Have the child repeat this process 3-5 times.
4. Pretend blowing out a candle – help the child to imagine there is a candle in front of them and have them take a deep breath in and then blow out the imaginary candle slowly. 
5. Smell the flowers – have the child pretend to smell a flower while taking a deep breath in.

Download the Creating Comfort for Kids Infographic, which gives a great overview of the best pain management strategies for helping kids get through needle procedures feeling calm, comfortable and in control.

Diabetes Distress or Burnout

Burnout or Diabetes Distress is a state in which you grow tired of managing your diabetes. Burnout is normal and it is important as a parent you stay encouraging of your teen during this time. Try supporting your teen to shift their thinking and continue to help them management their daily diabetes care.

Burnout may include:

• Lack of motivation
• Lowering aims and targets
• Missing and avoiding appointments
• Feeling helpless in being able to change the situation

Children and teens may feel:

• Out of control and ready to give up
• No longer interested in activates they used to enjoy
• Isolate themselves from friends or family
• Feeling generally unhappy and fed up
• School work starts suffering

Why does this happen?

• A huge amount of effort is involved in staying well and endless care is needs to management Type 1 diabetes
• Anger at the unfairness of having type 1 diabetes
• Burnout can often follow the common experience of doing everything right but still failing
• Thinking “perfection vs. failure”

Strategies to deal with burnout for parents and teens:

• Simplify diabetes routine where possible
• Sharing the load with family members
• Re-education
• Doing things that take your mind off diabetes
• Adjust your expectations- sometimes people are trying to be perfect all the time, try not being too hard on yourself
• Set do-able-goals
• Find compromise- share responsibility with your teen
• Try not letting your lives revolve around diabetes, mix it up
• Take one step at a time and don’t give up

Other strategies

• Mindfulness or relaxation activities

Technology (Emotional response)

Commonwealth funding exists for the provision of Continuous Glucose Monitor (CGM). The social work role can offer information and advice to support parents to manage change in technology through their journey.  Primary school children may feel different wearing monitoring technology, so it is important to encourage them to make them feel more confident. 

A good exercise to do with your child is role play ways they can respond when faced with common questions they may be asked:

Do injections hurt? Is Diabetes contagious? Will it go away?

Can you eat chocolate? Should you be eating that? Why you wear that on your arm?

Are you allergic to sugar? Can I have a go with your pump? Did you get diabetes from eating too many lollies?

Teenagers need limits to technology but are required to use technology for Type 1 Diabetes management. Plus many T1 teens can feel different wearing technology. Social work has a role in creating this conversation, normalising feelings, and linking to support and referring to resources if required.   Positive body image and technology is very important.

Here are some examples of a safe screen time apps:

• Beacon app (external website)
• eSafety Commissioner: Parental Controls (external website)
• Bark parental control (external website)
• Qustodio parental control (external website) 
• Apple family sharing (external website)

The following will assist you in setting up parental controls on your child's devices

• Apple parental controls, for your child's iPhone, iPad and iPod touch (external website)
• Google parental controls, for Android devices (external website) 

Schools and Exams

The WA School Curriculum and Standards Authority has agreed to give students an extra 10 minutes for each hour of their ATAR exams. The links below detail what to discuss with your child's school:

• ATAR assessments (external website)
• Diabetes in Schools (external website)

Diabetes and Driving

• National Diabetes Services Scheme: Diabetes and Driving booklet (external website)
• WA Department of Transport Medical Assessment Certificate: Fitness to Drive (Form M107A) (external website)

Emotional and parenting supports

The JDRF Wellbeing Guide is for parents and carers of children and teens living with type 1 diabetes. The guide aims to cover common issues and offer practical insight.

Early years

Fix issues before they become real problems, and positively influence your child’s skills and development.

• Bright Tomorrows parenting app gives families tailor-made tips (called moments) which will enhance their children’s development of key life skills during everyday activities (external website)
• Triple P – Positive Parenting Program provides a toolkit of positive parenting strategies (external website)

Children

• Tuning in to Kids^® emotionally intelligent parenting for kids' wellbeing (external website)
• Circle of Security: a visual map of attachment. From these intimate attachments a person draws strength and enjoyment of life and, through what he contributes, gives strength and enjoyment to others.

Teenagers

• Beyond Blue Mental Health check-in promotes mental health and wellbeing so people have greater knowledge, feel safe to talk openly about their issues and are supported to ask for help when they need to (external website)
• Triple-P – Positive Parenting Program for parents of 10-16 yr-olds (external website)
• National Diabetes Services Scheme (NDSS): Emotional and mental health (external website)
• JDRF personal support: access information regarding Type 1 Diabetes support. This site offers an email link to provide personal connection to people living with Type 1 Diabetes

Mental Health Services

• The Type 1 Diabetes Family Centre provides peer and psychosocial support and psychology appointments to children with Type 1 and their families. The service offers a range of events, camps, speakers, workshops, and community forums. It is a service for children and adults with Type 1 Diabetes (external website)
• Child and Adolescent Mental Health (CAMHS) Crisis Connect – 1800 048 636 – 24/7: provides phone and online videocall support for children and young people who are experiencing a mental health crisis, as well as support and advice to families, carers and professionals in the community.
• Head to Health: easy online access to a range of mental health information, advice and treatment options, enabling people to seek support in times of need, or when it is most convenient for them (external website)
• Beyond Blue – 1300 224 636: provides information and support for people with depression or anxiety, or anyone going through a tough time. Support services are available via phone, email or live chat, including online forums where you can connect with others (external website)
• Lifeline – 13 11 14: offers 24-hour confidential phone and online crisis support. People contact Lifeline for a range of reasons, including feelings of depression, stress, anxiety, and suicidal thoughts or attempts (external website)
• Headspace – 03 9027 0100: a mental health foundation for youth, providing early intervention mental health services to 12–25-year-olds. Information and services also available to young people, their family and friends, and health professionals (external website)
• Kids Helpline Phone Counselling Service– 1800 55 1800:Australia’s free confidential 24/7 online and phone counselling service for young people aged 5 to 25. Qualified counsellors at Kids Helpline are available via web chat, email or phone. 
• Better Access Initiative: information about Medicare rebates to help people access mental health services provided by GPs, psychiatrists, psychologists and eligible social workers and occupational therapists (external website)
• National Diabetes Services Scheme (NDSS) Helpline – 1800 637 700 or email info@ndss.com.au – Diabetes Australia offers a free national NDSS Helpline, through which people with diabetes and their carers can access diabetes information, programs, activities, peer support groups.

Culturally and Linguistically Diverse (CaLD) Service

• Life without Barriers is a free mental health service providing short term, culturally sensitive, and evidence-based counselling to people from culturally and linguistically diverse backgrounds (external website)

Transitioning to Adult Diabetes Care

Transitioning from child to adult health care services is offered through the Perth Children’s Hospital Team. 

 This is a time of challenges and opportunities that young people face as they become young adults. Areas discussed include:

• adult diabetes service
• work, university or TAFE
• driving
• moving out of home
• diabetes routine

Download the NDSS booklet: Moving on up (external PDF)

The Sortli phone app has information you need to help support your transition to independence (external website)

• Alcohol and type 1 diabetes booklet – NDSS (external website)
• Drug use and type 1 diabetes booklet – NDSS (external website)
• Travel and type 1 diabetes booklet – NDSS (external website)

Useful apps

• Headspace: Mindfulness (external website)
• Calm: Meditation and Sleep (external website)
• Waking Up: A new operating system for your mind (external website)
• Smiling Mind: Mindfulness and Meditation (external website)

In conjunction with Diabetes WA and their partners the Diabetes Service facilitates theme-based and age-targeted diabetes camps and activities each year for children living with type 1 diabetes.

These events are designed for children to build confidence in managing their diabetes through experiential learning and to form friendships with other children with the condition.

Camps for ages 9 to 12 years are coordinated and run by the Diabetes Department Medical and Nursing staff with the assistance of the admin team, allied health staff, third party service providers and PCH volunteers.

Camps are held twice a year in the April and September school holidays at various metropolitan camps for 3 days and 2 nights.

When our patients turn 18 years of age or complete year 12, they will be supported by the PCH team to transition to Adult Diabetes services.

This is a time of challenges and opportunities that young people could face as they become young adults. Areas discussed include learning about adult diabetes services, work, university, or TAFE, driving, moving out of home and diabetes routine.

Please refer to the following resources:

• Transitioning to an adult diabetes health service (PDF)

The National Diabetes Services Scheme (NDSS) also has information and resources to support and guide young people with type 1 diabetes transitioning from a child to an adult health care services.

• NDSS: Moving on up to adult health care services (external PDF) - a useful booklet to guide the young person through all aspects, plus these additional relevant resources:
  • NDSS Alcohol and type 1 diabetes booklet (external website)
  • NDSS Drug use and type 1 diabetes booklet (external website)
  • NDSS Travel and type 1 diabetes booklet (external website)

The Sortli phone app has information you need to help support your transition to independence (external website)