It can come as a shock when your child is diagnosed with Addison's or adrenal insufficiency. If you're new to Addison's, there is lots of practical information and support available for free on our Newly Diagnosed page.

We're here to support you and your family alongside your healthcare team. Don’t be afraid to ask your healthcare team questions and ask for support, you need to understand what Addison's or adrenal insufficiency is and how to look after it too. 

Below are some resources which we hope will answer any questions you may have and guide you in taking on the adjustments a diagnosis requires. 

The essentials

Managing Addison's or adrenal insufficiency can be challenging, but we’re here to support you. Children and teenagers may not recognise when their health is deteriorating, and may not report warning signs of illness or insufficient medication until they become used to their body's individual warning signs. You read more about What is Addison's here. This is why it is key the following 4 items are with your child, or any person living with steroid dependency, at all times: 

  1. Hydrocortisone medication,
  2. Emergency hydrocortisone injection kit,
  3. Medical jewellery, and
  4. Steroid alert card (more information on the Paediatric Steroid Treatment Card below).

>> Read more about these items here

School

Our booklet 'When a student has Addison's: a guide for schools and parents' was written to help young people with Addison's who are in education to explain the condition, considerations needed and support required by a school or educational establishment.

>> Download: When A Student Has Addison's : A Guide For Schools & Parents

This includes an Indivdual Healthcare Plan template, to be developed in consultation with the child’s medical team as soon as possible after diagnosis and with the school.

Allowing the child to carry their medication and injection kit is similar to an asthmatic always carrying their inhaler and a diabetic carrying their insulin. It allows them to take their replacement glucocorticoid medication at the right time every day - or extra medication quickly when unwell or injured - which is vital to avoiding adrenal crisis. Below we share some ideas to help a child remember to take and store their medication.

What Is Addison's Educational Booklet

This educational booklet, 'What is Addison’s?' was written with school projects in mind and provides some basic information on the condition. It gives a little history of Addison’s, from its discovery by Dr Thomas Addison in 1855, through the scientific and medical advances that occurred in the twentieth century, concluding with an overview of what life is like today for people with Addison’s.

>> Download: What Is Addison's Disease

Remembering to take your tablets

Taking replacement glucocorticoid medication at the right time every day - or extra medication quickly when unwell or injured - is essential. Children can struggle to remember to take their medication, but this can lead to unpleasant side effects, ineffective treatment and put them at risk of adrenal crisis.

Here are some ways to manage medication, making it part of the child's routine, increasing their confidence and independence in managing this life-long condition:

  • Smartwatch: watches such as Fitbits and Apple Watches allow you to set discreet vibrating alarms. Being on their wrist, these are great for making sure you don’t miss a dose due to distraction in a lesson or work meeting or not being near a clock.
  • Apps: Apps allow the child to note their medication, to help you keep track of your doses throughout the day. Our two favourite apps are:
    • Medisafe - one of the #1 apps for tracking medication available, you can sync with your family so they know when you're late taking a dose and also set repeat prescription reminders. The app can be downloaded for free for Android and Apple devices
    • My Cortisol – developed by Great Ormond Street Hospital endocrine nurses, this is a free app available for Android and Apple devices to help with emergency care of young people with cortisol deficiency.
  • Dossette box: these boxes are handy ways to store your medication. Choosing the right one depends on your needs. So have a look on Google, Amazon or pharmacies like Boots.
  • On our online shop we offer a "pill pocket" which fits easily into a jean pocket, or school pencil case. This can be a great way of keeping extra medication on you at all times.

For more ideas on storing your medication read more about our #ShareYourKit campaign and watch our #ShareYourKit Instagram highlight.

What do I do if I've missed a dose?

If in doubt, take the dose again. Taking more replacement glucocorticoid medication than is needed for a short period, will do no harm. There is no known toxic dose of hydrocortisone. Read more in our 'Managing Your Addison's' publication.

However if sufficient extra medication is not taken, they will feel unwell and may then go on to experience an adrenal crisis if their cortisol levels remain low. So if a dose is missed, or the child can't remember if they've taken a dose, it is far safer to take extra medication as a precaution and then start using one of the memory aids we've recommended above.

Need to talk? Online forum

On our members forum we have a specific "Young People and their Families" section, where you can discuss any specific issues facing children and their families in a private, safe space. 

Read through posts left by others or start your own topic to receive advice and support. The forum is a great place to gain new knowledge through the experiences of others and to ask any questions you might have as your child grows up. Become part of our community.

>> Visit our online forum

Blog

You are not alone in your experiences. As well as in our members magazine, over on our blog we feature posts written by people living with Addison's and adrenal insufficiency. Some have the condition themselves, others have someone in their family who is steroid-dependent.

>> Visit our blog

Social Media

If you or your child use social media, you might find it helpful to chat, find support and discuss issues with others, as well as discover more about our campaigns, information and activities on our charity social media accounts.

>> You can find us on Facebook, TwitterInstagramYouTube, and LinkedIn.

We also host regular Twitter Chats where we ask an expert panel, made up of endocrine professionals as well as expert patients, your questions around a specific topic. Previous topics you might find helpful include:

You can catch up on all the previous conversations via the hashtag #AddisonsQA on Twitter.

Looking for more information? Check out the links below:

Further resources

Great Ormond Street Hospital (GOSH) also provide information about how to deal with illnesses, accidents and other stressful events in children on cortisol replacement on their website - click here.

They have a brilliant range of teaching videos talking through cortisol replacement which we have included on the 'ADSHG picks from around the web' YouTube playlist and linked below:

A specific steroid treatment card for children and adolescents was published by the British Society for Paediatric Endocrinology and Diabetes on 27th November 2020.

The BSPED Paediatric Steroid Treatment Card for Adrenal Insufficiency provides a succinct steroid management plan for illnesses, emergency injections and blood sugar and electrolyte correction. It is available to view or download from their website here. BSPED is keen to encourage uniform practice and improve the care of children and young people with Adrenal Insufficiency. 

If you have any queries regarding the card please contact the BSPED Clinical Committee ([email protected])

RARE Youth Revolution is a dedicated news platform for young people to access relevant content centred around rare diseases.

Split into kids (under 12 years old) and young adult (teens +), RARE Youth has something for all young people and is a great support site to show your child they are not alone in their diagnosis of a rare condition; there is a brilliant and empowering rare disease community out there for them.

In 2019 following requests from our members, we were delighted to release "Living with Addison's disease", a book which brings evidence-based clinical best practice with practical day-to-day hints and tips for those with Addison's and adrenal insufficiency.

The book is available on Amazon to allow for worldwide shipping and is free on Kindle.

The book includes a section on "Children and Young Adults with Addison's" as well covering lots of essential information about the condition for you and your child.

The book won commended in the 2019 British Medical Association (BMA) Patient Information Awards! You read more about the award in our news item here.

You & Your Hormones is an education resource developed and managed by the Society for Endocrinology. You & Your Hormones breaks down the different topics around Addison's disease and adrenal insufficiency into glands, hormones and endocrine conditions. This great resource allows you to learn more about the condition and answer more specific questions you or your child might have.