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!
This blog is for those who care for/support Children and Young People with LTHC’s
It aims to help and support, to aid understanding and confidence in managing these Conditions, using a variety of Health Charities & Support Networks both online and in local communities, through targeted resources in a variety of styles, theme and content.
We’ll browse over a few ideas but head to the the Time To Heals Parent Support Page which is launching today for more information and some great links, tips and opportunities.
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 first point of call should be The Pituitary Foundation who have a vast range of resources and support networks.
Support For Young People provides guidance and information on 9 key areas;
Understanding Pituitary
Tests, Scans and Treatment
Sport & Physical Activity
School, College and Work
Travelling
Relationships, Sex and Fertility
Food and Nutrition
Stories
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
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 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.
Communication
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.
Activities That Apply
Although these are designed for those with learning disabilities they could be transferable to others who face similar challenges. Ways To Keep Busy is an incredible resource. This is split into 4 easy to follow sections;
Weekly & Daily Activity Resources
Create, Craft & Play
Exercise & Learning New Skills
Mental Wellbeing Exercises
Toys/Hospital Support
This is something positive to come out of COVID! 3dToyShop and is the mastermind of Nick Hardman aims to provide;
’Bespoke representative toys to help children normalise and identify with their differences’.
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 devices and more! You can find out more and make orders at; info@teddyshuntvalve.com
This link from the NHS looks at Accessible Toys For Children & Young People. It aims to help you identify the best toys available, tips on cutting costs and organisations that can help.
The BBC featured these great Toys that are made to have feeding tubes in a similar way to the 3D Toyshop but these are more specialised to those needing tubes.
(Debbie Jackson, BBC Scotland, 5 February 2019)
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.
Supporting a child through a Chronic Illness is extremely challenging. Parents and carers also need to look after themselves. If you need support then it’s close at hand. Mental health Charity mind.org.uk produce an abundance of support. Health Charities are also a great place to look. You’ll unearth some great resources by looking at the relevant charity which relates to your child’s conditions. Most have special helplines that can support you and signpost you to the exact area of need. You can also register yourself as a carer with your GP and they can then support you through the medical route, as well as hospitals offering direct support.
As always these are just some options available out there to help the entire family. Take care, stay safe and most importantly enjoy every minute of your time with your children, even when times are tough.
The Pituitary Foundation
Steroid Card For Children
Support For Young People
Hydrocortisone Advice For Parents
https://pituitary.org.uk/information/publications/parents/hydrocortisone-advice-for-parents-leaflet/
School Care Guide
Mencap - Ways To Keep Busy
Communication Links
Signalong
Makaton
British Deaf Association
Talking Mats
Widget
Symbol World
Accessible Toys For Children & Young People
Distraction Therapy - Great Ormond Street PDF
Universal Medical - Kids Jewellery
Medic Alert - Kids Jewellery
Nick Hardman - Creating Special Toys For Those With Medical Conditions
The 3D Toy Shop
Coming up next week......
Handling Grief When you Have A LTHC/Mental Health Condition. A blog to support you through what can be the most challenging of times.