Younger children may not recognise when their health is deteriorating, and may not be able to reliably tell you when they are not feeling well. You may have to rely on noticing changes in their behaviour or concentration, which can tell you a bit about how they are feeling.
This means it is important for the people around them: family, friends, school teachers and others with a duty of care to them, to be aware of their adrenal insufficiency/Addison's diagnosis, and to be vigilant to spotting the signs that they may be unwell or experiencing low cortisol.
Both the ADSHG and the British Society for Paediatric Endocrinology and Diabetes (BSPED) have a host of resources to help you and others involved in your child's care, to manage their condition from day-to-day and to keep them safe.
Where to start
A good place to start is to read our leaflet, 'What are Addison's and Adrenal Insufficiency'. This provides a summary of what you need to know about what might have caused your child's condition, how it is treated, and how it might affect you and them, from day-to-day. Importantly, it will also help explain adrenal crisis and why it is important to manage their condition carefully to try to avoid having one!
Learning about their condition will help them to stay healthy and safe, and help you all feel more in control and confident to manage it each day.
For specific and more detailed information about CAH or adrenal leukodystrophy, please explore the relevant patient support groups for those conditions:
Alex, The Leukodystrophy Charity (Alex TLC)
Next up, we recommend reading the 'Adrenal Insufficiency Action Plan' leaflet. It uses traffic light colours to explain your child's treatment on a 'normal day' (green), a day when they are feeling unwell (amber) and in the situation where they have an adrenal crisis (red). It is another great leaflet to help you and others understand their needs, especially teachers or their GP, who might not come across adrenal insufficiency very often.- Once you have an overview from the leaflets above, you are ready to explore our website, particularly the pages for people who have only just been diagnosed, and our pages on daily replacement medication. Please note that our website is generally written with adults in mind, rather than children, however, the principles are generally the same. Always check specific clinical recommendations with your child's own healthcare team. Also, as some of the information is quite detailed, you may want to ask your doctor if you need support to understand something better, especially if your child is newly diagnosed.
Sick Day Rules
Sick Day Rules are clinical guidelines on times when your child needs to increase their medication to give the body more cortisol. This is when your child is unwell physically or under severe emotional stress.
Whether your child has had a playground bump or a major trauma will dictate what additional steroid support they need (how much extra cortisol their body needs). It is important to note that the Sick Day Rules are not in fact rules - they are guidance, and everyone is different in their response to triggers.
We recommend you read our Sick Day Rules webpage and our 'Understanding Steroid Medication and Sick Day Rules' leaflet, even though they are written for adults. They will give you a background understanding before you read the clinical advice from BSPED for under-16s.
Adrenal Crisis Management (under-16s)
- Read our page on adrenal crisis to better understand what an adrenal crisis is and what the triggers for it might be.
- Adrenal crisis treatment (how much hydrocortisone should be given in an emergency) in children is defined by age, although children aged 6 years and over are given the same emergency dose of hydrocortisone as an adult (100 mg). The diagram below is from the BSPED Adrenal Insufficiency Consensus Guidelines
Steroid Emergency Card for children
So that healthcare professionals can quickly understand your child's health needs, make sure they always carry a Steroid Emergency Card with them.
The NHS Steroid Emergency Card was designed for adults, so BSPED have created one for children that is available to download from their website.
Download the BSPED Paediatric Steroid Care Plan
Your child should always carry...
Their daily steroid replacement medication (hydrocortisone).
This needs to include what they need for their daily dose, plus some extra in case they need to follow Sick Day Rules, or in case they lose some!
An emergency injection kit for you or someone else to use to give them an injection of hydrocortisone if necessary, to prevent or to treat an adrenal crisis. Your child's endocrine team will provide you with a prescription as well as the other components of the kit, which will include suitably sized needles for your child.
Steroid Emergency Cards & Medical ID jewellery - these help others to recognise that your child has adrenal insufficiency and that they are 'steroid-dependent' i.e, they need to take their replacement steroid medication on time, every time.
Making others aware of their condition
