Time to Heal
Supporting those with Pituitary Conditions, Addison's Disease & their Mental Health
Parental Guidance For Those with Children Who Have Pituitary Conditions.
Being ill is no fun for anyone but especially so for Children. So let's help you get your children happy, healthy, and in control of their conditions. We'll explore the difficulties and challenges faced, look at some support mechanisms available and introduce a specially constructed log featuring special characters to aid your children through art & craft, cooking, a special log, and loads more!
If you are a parent/carer or have another link with Children and Young People with Pituitary conditions such as teachers and sports coaches then supporting that child can be extremely difficult. Having the support information required through the process of diagnosis and as they learn, grow, look to being at school, and having fun with friends can be something daunting for everyone involved. Although this page and information is more specific to Pituitary Conditions and Addison’s Disease there are plenty of resources and information networks that will aid/support any parent/carer of a child or young person who has a LTHC/disability.
The Pituitary Foundation
The first point of call should be The Pituitary Foundation who has a vast range of resources and support networks.
Support For Young People provides guidance and information on 9 key areas;
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Understanding Pituitary
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Tests, Scans, and Treatment
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Sport & Physical Activity
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School, College, and Work
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Traveling
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Relationships, Sex, and Fertility
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Food and Nutrition
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Stories
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Support
There is also a downloadable Hydrocortisone Advice For Parents booklet and a School Care Guide. Importantly in case of an emergency, there is;
‘A new Steroid Card For Children with adrenal insufficiency has been developed by the British Society for Paediatric Endocrinology and Diabetes (BSPED). The card is designed to improve uniformity across NHS trusts and improve the treatment patients receive’.(News Date 16/12/2020 https://www.pituitary.org)
This card can be downloaded straight onto a phone or a paper copy for children to carry with them. It details their need for treatment
Time To Heal - Children's Log Book
Working with The Pituitary Foundation UK, Time To Heal Have produced their own log to help support your children. It comprises some colourful characters, daily log sheets, art, craft, healthy eating ideas and more to help your child communicate how they are feeling that will also enable you to share with medical staff as well as some fun activities that will aid their understanding of the terminology they may hear which can be both frightening and increase anxiety levels.
3D Toy Shop
This is something positive to come out of COVID! 3dToyShop and s the mastermind of Nick Hardman aims to provide;
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’Bespoke representative toys to help children normalise and identify with their differences’.
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You can read about this inspirational man through Dad Creates Special Teddy which highlights how by utilising just a home printer he has managed to create ‘medical devices’ for toys. You’ll find a vast array of toys all fitted with medical devices such as shunts, dialysis machines, splints, prosthetic limbs, traceostomy device and more! You can find out more and make orders at; info@teddyshuntvalve.com
Communication
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The handy list below has great links to some websites recommended by Mencap to support those who struggle with spoken word or need additional support which could be invaluable in supporting your child and enabling them to convey to you how they are feeling;
Signalong and Makaton (both Sign Supported English systems). They are based on British Sign Language (BSL), but are used to support the spoken word.
Visit the British Deaf Association website to find out more about BSL.
Talking Mats are a communication system that uses symbols and other images.
Widget produce software symbols to help with communication and accessibility.
Symbol World
is a website run by Widget for symbol users that includes nursery rhymes, stories and a monthly magazine.
(https://www.mencap.org.uk/learning-disability-explained/communicating-people-learning-disability
Beads Of Courage
This incredible programme provides Support for Children with serious and chronic illnesses. Through their journey, they gain beads made by volunteer artists each time they have treatment or a general appointment, in the hope of alleviating some of their stresses and anxieties.
Great Ormond Street Hospital
Great Ormond Street Hospital is at the forefront of medical treatment and research in the UK. They have produced this great resource Distraction Therapy as a way to support parents and carers, to make treatment as easy as possible for any child when they head to hospital for treatment.
Medical Jewellery
Universal Medical Aids and Medic Alert are just two companies that produce jewellery for children, young people and adults. These are easily recognisable by medics should problems occur. You can personalise the information and select from a range of products. There are bright and cheery ways to wear bands alongside sterling silver link bracelets.
You also have the choice to sign up and register your child. This involves payment but means that If something does happen the contact number on the engraved bracelet of choice will go straight through to the medical group and any medical information you have given them will be translated to the Dr’s treating your child immediately. So some peace of mind is offered here.
If your child has a condition such as Diabetes then you can purchase ready labelled bracelets and necklaces from many places including Amazon.
Get Red Flagged
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Getting Red Flagged is also important in terms of emergency at a home address a paramedic will automatically be dispatched as opposed to a standard technical so that emergency cortisone can be administered on arrival and then monitored and topped up where required. The best way to approach this is via the Pituitary Foundation Factsheet which you can download.
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