Paediatric Long-Term High Dose Steroid Information Card

Parent/ Carer Information

This leaflet is for children and their parents/carers who are receiving high-dose and/or long-term treatment with corticosteroids. Common types of steroids include: prednisolone, budesonide, dexamethasone, fludrocortisone, hydrocortisone and methylprednisolone.

How are they given?

Steroids can be taken in many different ways depending on the medication. They can be taken by mouth, either as tablets or soluble tablets, nasally via a nasal spray, inhaled via an inhaler, given into a vein through a cannula, central venous catheter or implantable port, through the skin as creams or injected into a muscle or joint. Please follow the route and instructions as directed by the doctor, nurse or pharmacist.

Important information

1. Steroids MUST never be stopped suddenly.
2. If your child is unwell, contact their clinical team for advice.
3. If they are unable to take their steroid medication, are very unwell, require surgery, or have been involved in a major accident, seek urgent medical attention.
4. If your child is in contact with chickenpox or develops chickenpox, contact your medical team immediately Chicken pox can be more severe in children taking steroids.
5. Your child should not receive any “live” vaccines while on steroids
6. It is vital that you inform other healthcare providers that your child is taking steroids.

Steroid treatment

Many children are prescribed steroids to treat an underlying condition. These are crucial for managing your child’s condition, it is important to be aware of potential side effects.

Side effects of steroids

• Behavioural changes
• Increase in appetite and weight gain
• Increased susceptibility to infections
• Stomach irritation (abdominal pain)
• High blood pressure
• Change in blood sugar level
• Effect on bone growth (slow growth)
• Increase bone fragility
• Risk of adrenal suppression

Infection

Children taking steroids have an increased risk of infection. If your child has a fever or becomes unwell, please contact your medical team.

Chicken pox can be more severe in children taking steroids. If your child is in contact with chicken pox or develops chicken pox please contact your medical team or GP immediately.

Adrenal Suppression

The adrenal glands sit on top of the kidneys. They produce many different types of hormones. One of the most important is cortisol.

Cortisol is a hormone that is produced as part of the body’s stress response to illness. It also helps maintain glucose levels, blood pressure and blood circulation. It is the natural steroid of the body.

Taking high doses of steroids over a long period of time can cause adrenal suppression. In adrenal suppression, the adrenal glands are unable to make enough cortisol themselves. This means that if your child becomes unwell, they are at a higher risk of rapidly becoming very ill, a condition known as adrenal crisis (see below).

Your child’s clinical team should have given you a blue steroid card with instructions. It is important to keep this card with you at all times.

The following signs may indicate that your child has developed adrenal suppression.

• Weight loss
• Salt craving
• Nausea or vomiting
• Slow recovery from minor illnesses (more time than the rest of family)
• Lack of appetite or unable to eat a full meal
• Abdominal pain
• Diarrhoea
• Dizziness or light headedness
• Lethargy (worse in the afternoon)
• Muscle weakness
• Faltering growth

It is important to watch for the signs mentioned above and seek advice from your medical team, even up to a year after finishing steroid treatment.

Diagnosing Adrenal Suppression

If adrenal suppression is suspected, your clinical team will request an early morning (between 8am and 9am) blood test to check your child’s cortisol level.

If adrenal suppression is confirmed, your child will be referred to a Paediatric Endocrinology team (hormone specialists) and may need to start a different oral steroid called hydrocortisone. Your child will be monitored every 3 months, with other tests performed until their cortisol levels return to normal. You will be trained on how to support your child during illness, and a special treatment plan will be created for any surgery.

Adrenal suppression caused by long-term high-dose steroids is a transient condition and will resolve with appropriate management.

Adrenal Crisis

Children and young people with adrenal suppression are at risk of experiencing adrenal crisis. This can occur during illness or stress and can cause them to become very unwell very quickly.

Adrenal crisis should be considered in individuals with, or at high risk of, adrenal suppression who are unwell and showing symptoms including:

• Lethargy
• Pallor
• Clamminess
• Feeling cold or feverish
• Confusion or altered mental state
• Drowsiness/difficult to wake up/loss of consciousness.
• Weakness
• Low blood pressure
• Low blood sugar

Medication

Bring all of your child’s medicines (including inhalers, injections, creams, eye drops or patches) and a current repeat prescription from your GP when attending the Emergency Department or are admitted to hospital.

Please tell the ward staff about all of the medicines you use. Pharmacists visit the wards regularly and can help with any medicine queries.

My Chart

We would encourage you to sign up for MyChart. This is the electronic patient portal at Cambridge University Hospitals that enables patients to securely access parts of their health record held within the hospital’s electronic patient record system (Epic). It is available via your home computer or mobile device

More information is available on the My Chart section on our website.

Contact details for advice

Please contact your child’s clinical team to discuss any questions, queries or concerns.

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