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Open communication

Be as open as possible with facts about your young person’s condition. Depending on their age and understanding, give them information about the condition and treatment. Talk to them in a positive tone,

e.g. “this test might hurt a bit, but it will be over quickly�.

It is normal for your child/young person to have ups and downs in their emotions. Encourage them to talk about it is the first step, so they won’t feel alone in dealing with their emotions.

Some young people may find it easier to talk to adults outside the family, like aunties or uncles, school counsellors, teachers, or IBD team.

Allow your child to ask questions

Listen to them and provide reassurance. Let them talk about how they feel about the symptoms of the treatment. 

Acknowledge that the condition and the treatment can bring a lot of different emotions and inconvenience to their life, and it is okay to feel upset or not be okay.

Remind them that flare ups are temporary, and adhering to the treatment will help them feel better. Remind them that it is not their fault that this is happening.

It’s okay if you don’t have the answers to your child’s questions, your care team can help!

If your child is old enough, let them take some responsibility for their treatment. Whenever possible, give them a choice � e.g., “Do you want to take your medicine with juice or water?�, or Do you want to take your medicine before or after homework?�.

Involving your child in their care

To prevent things from feeling overwhelming, encourage your child to develop an ‘IBD Toolkit�. It can contain things like a list of medications, the doctor’s contact details and dates of appointments and admissions etc.

Ask your child to write a list of things that help when they feel unwell e.g. I like a heat pack on my tummy.

Talk to them about what to do and who to contact if they feel unwell at school or when they are out.

It’s likely you will have to adjust parts of your child’s or the family’s life, but its preferable to keep as much the same as possible.

It’s important for your child or young person to continue to feel a sense of mastery and that IBD hasn’t taken all the fun things away from them. 

If possible, continue your family activities � if your child or young person has a flare up, postpone the event, or adjust to accommodate it. Ask your IBD team for ideas; they talk to lots of families who have similar issues.

Remember that IBD is only one part of your child or young person. Continue parenting them as you would without the IBD diagnosis � show interest in other parts of their lives and continue to keep the boundaries that you would for other kids.

Keep some special bonding time between you and the other siblings � it’s easy for the other siblings to feel forgotten when all the attention is shifted to managing the medical condition for the young person.

On flare up days, you may consider taking the day easy so the young person can rest. Try to maintain some structure including activities.

It can be helpful to keep their mind off it and do something they enjoy.

Consider activities like:

• arts and crafts
• reading
• playing computer games
• having a friend visit briefly
• learning a skill on YouTube
• doing schoolwork

It is normal for your young person to have ups and downs in their emotions. Encourage your child to talk about their feelings so they don’t feel alone in dealing with their them. Some young people find it easier to talk to adults outside the family, e.g. aunties or uncles, school counsellors, teachers, or IBD team.

Support your child to continue to do things they enjoy â€� they may need your help to make adjustments to feel safe to go out and venture without feeling anxious about IBD. 
 

Attending hospital can be stressful for you and your child.

How much information you give your child depends on the individual; however, young people usually prefer some notice and information so they can feel more prepared.

Explain what will happen at the appointment, how long it will take, who will be with them, and encourage them to ask questions.

Choices help young people to feel in control. Offer choices, such as what toy/distraction they want to bring to the appointment, or what food they would like after the appointment.

For younger children, bring their favourite toy to accompany them. 

Remember to bring a book, or other activity to keep yourselves entertained while waiting to see the doctors. 

If you have other children, try to arrange for family or friends to look after them while you are at the appointment.

Before the appointment

Write down any questions you have for the doctors or nurses. If there is a lot of information, it can help to write notes or ask the care team for information sheets. You are welcome to bring a support person.

Leave plenty of time to get to the appointment � traffic or parking can add unnecessary stress.

On the day of the appointment

Please come to Albert Shun Clinic, Level 1, The Children's Hospital at Westmead.

We request that only parents/carers attend.

Please bring your Medicare card as this is a bulk billed service.

Follow up appointments

Please follow-up within 3 months with your child’s referring Gastroenterologist to discuss results and renew medications and monitor your child’s progress.

Appointments can be made by emailing the Outpatients Department on [email protected].

These ideas might help young people remember to take their medicine:

• Make taking the medication part of their daily routine by pairing it with another activity. e.g., when they brush teeth.
• Put the medication somewhere to remind them e.g., next to their lunch box or school bag, or on their bedside table.
• Set alarm reminders on their phone or smart watch.
• Consider using a reward chart to promote adherence to the medication schedule.

Younger children will still need an adult to supervise taking their medications.

As your child gets older, young people value some independence and responsibility. Talk to your young person about how they would like to transition to independence in taking their medications. 

If you or your young person have any concerns or questions about the medications, don't just stop taking them; instead, tell your treating team so the issues can be discussed. 
 

It is understandable and normal if you are worried about your child’s physical or mental health.

IBD onset is often sudden. Diagnosis can be difficult and finding the right treatment may take time. Because of this, parents and carers need time to adjust.

Taking care of yourself is important, especially when others depend on you. Managing your own mental health helps you be a more connected and effective parent, and available to support your child or young person.

Support from family and friends

Remember, you are not alone. Family and friends will want to help. Here are some examples of how they can assist.

• Accompany you or take your child to appointments.
• Mind your other children. Assist with school pick-ups and drop-offs.
• Mind the IBD patient, so you can spend special time with the other children.
• Look after your children, so you can have time on your own.
• Help you by going to the supermarket, or the pharmacy to collect medications.
• Provide emotional support. Going for a walk with a friend, talking to them about your difficulties and doing something enjoyable together will make you feel better.

If you are concerned about your child’s mental health, or if they start to show these signs, you may want to engage with a mental health professional.

It can be tricky to know what to say or how to help when your child is feeling upset or overwhelmed.

There are some warning signs that tell you that your child may require some additional support. They include:

• Being quieter and isolated from the family and friends
• No longer wanting to do things they normally enjoy
• Sleeping too much or not being able to sleep
• Changes in their daily functioning because of their mood or anxiety (e.g., social life, academics, engagement in hobbies, and general self-care).

Talking to other families and sharing your experiences with them can help you remember that you are not alone. You may be able to learn from others how they manage different aspects of the IBD management as well.

You can also speak to a trained phone counsellor.

• Parent Line (ph: 1300 1300 52) 
• Kids Helpline (1800 55 1800)
• Beyond Blue (1300 224636)

Speak to your GP and ask for a mental health care plan.

Talk to your IBD team, who may be able to refer you to the Department of Psychological Medicine to access the service within the hospital.