Parental Guidelines For The Children's Pituitary Condition Blog.
- timetoheal1210
- Feb 2, 2020
- 6 min read
Parent / Carer Guide To The Pituitary Journal
This log is a joint project between patients, hospitals, parents, guardians and potentially Dr’s, nurses and other family members. Used in the right way it can offer a great journal that is fun to use. It’s like a diary but with a bit of a twist to engage young minds, help them learn about hospitals and what might happen to them in the hope of making it much easier for the whole family to cope with.
It’s a way to allow your child to express their thoughts and feelings about their health. A fun booklet to share and allow your child to find their way through a serious illness.
It can be embedded into a routine and if used correctly established provide a simple but effective way through a serious illness.
An excellent resource to take to the Dr, Nurse / hospital / GP appointments.An opportunity to monitor health and make links to bad days and what can cause them. It can establish the main vocabulary you are both likely to come across but in a fun way.
Why not include friends / family and siblings? They could join in and help with the puzzles, play the games, do the art and craft books etc. Then they can bring their own dazzle boxes etc if you need to bring other siblings to the hospital as well or even if they would like to utilise them at home. This will also help them to understand what is happening to their brother or sister.
There is potential for you to create your own art therapy colouring patterns and give them to each other to complete. You could even make a collage of them and put it on on the wall for all to see. You could do the same with the word searches, especially as new vocabulary comes into treatment and the child needs to understand things differently or learn something completely new.
It’s a great way to reinforce what has been has been said and guide as to what your child has absorbed and understood from various Doctor and nurse appointments. Tackling this through the log will make your child more aware and as they grow older they will be able to express themselves better at home, school and other environments.
In order to maximise the usage for this book you will need to invest in some craft materials and food items. You probably have a lot of items at home already that can be used and if you shop ‘cheaply’, use birthday’s, pocket money etc you can have all the items you need for the craft and cooking activities within the log for minimal outlay.
For Example: Visit Poundland with a budget of £10 and you could purchase the below:
1. A pad of coloured paper
2. Pack of patterned paper
3. Art therapy colouring book
4. Notepad
5. Craft embellishments
6. Stickers
7. Pack of colouring pencils
8. Selection box of cereals
9. Pack of porridge oats
10. Pasta sauce
However, a lot of the things that are made on the craft pages use things that you can probably find around your home already! It would be worth pulling together some of the following items to one side and perhaps putting them in a box ready to use. You could either use a patterned box you already have, a special box that you buy or just a plain cardboard box that can be left plain or decorated with photos’ drawings, painted etc! So what to include? Try Magazine holders, pencil pots, gift boxes etc. Glass jars / tins to store cooking treats in. Wrapping Paper to cover boxes Pictures from magazines or newspapers that interest the child. Save Birthday and Christmas cards with pictures and writing on. Stickers from magazines Cardboard that is flat or can be flattened. Colouring pens and pencils & Paper
The Dazzle Box
This is something that is likely to become a great comfort to your child and be used numerous times. You don’t have to make everything in this book, they are just ideas. You may already have some items that would be great such as fidget spinners, mini skateboards and cars, card games and travel games. Anything that helps your child to be comfortable, relaxed and entertained is worth putting in the box!
Included in the template section are sample log sheets that you can easily photocopy or your child could make up themselves. There is also a certificate which you might like to use to encourage your child to complete their booklet, some cue cards and a record card for eating fruit and vegetables. The children have templates of their own which again can easily be cut out or photocopied.
The Pituitary Foundation UK
As a parent or guardian having a child with an illness that requires monitoring and hospital visits, worries and concerns you can always rely on the The Pituitary Foundation who have a very informative booklet, produced by Pat McBride.
This will give you all the knowledge you need in order to understand your child’s condition. Taking the time to read this will give you greater understanding of your child’s needs and what you can expect in terms of hospital visits, everyday care and ways to support your child.
The Addison’s Disease Self Help Group
If your child has Addison’s disease then similar support is available on The Addison’s Disease Self Help Group.
EAT them to Defeat them.
This is a great project to encourage healthy eating for children. In the template section you will find a chart to encourage your child to eat vegetables. there is also a great website with all sorts of ideas.
Rarediseaseday
This day is held annually and pituitary conditions are included. There are some great downloads and information available on this site. Why not find an event and get involved.
Working With Your Child’s School
Working with your child’s school is essential to ensure they are well informed and can communicate with your child about their illness in order to ensure they are safe and well. It is normal for all sides to be anxious and worried in the initial stages of starting school and when teachers change each year etc. Therefore, you need to be well informed and so does the class teacher, office staff, medical team and if possible a member of the school management team.
A great way for your child to communicate is through the use of cue cards. These are small cards your child can take to school and have near them on on their teachers desk and be utilised as a way to communicate how they are feeling in a discreet manor. Done correctly will enable everyone to feel they can manage your child’s condition at school knowing they will be well looked after.
The ideas below are just ideas! You need to make them specific to the child and they should be involved in creating these cards, but having a template with some words like the below will hopefully give you ideas that you can then alter, change etc in collaboration with the school, yourselves and the child.
There is a template in the back of the log for the cue cards and also some ideas on the words. There is also a page for your child in their log so they know how to make the cards and have a say in what goes on them etc.
Initially your child may mistake their feelings as being unwell if they are nervous, feeling shy or worried about something. This is natural and it may take them some time to get it right and for the teachers and support staff to recognise the symptoms as well.
Key Factors Schools Must Consider.
1. These conditions are serious 2. Close working between, child, teacher, school first aiders and parents are crucial. 3. If ‘stress’ is being placed on the body - e.g exams, short tests, exercise, it is important to ‘keep an eye’ on the child. They may be in need of extra medication before doing anything energetic.
4.Ensure you know the triggers / signs that health is declining.
Younger children will find it harder to tell that they are becoming unwell, so it’s important to keep an eye on them and help them through difficult times. They need to be comfortable about telling you if they feel unwell especially if they are in the middle of something they are enjoying.
Use of cue cards could be really helpful. Having a playground ‘buddy’ in an older class could also be really helpful.
We hope these simple suggestions will be a positive effect on a serious matter and support everyone within the 'care team' required to manage such difficult and detailed matters. We would love to hear your feedback at timetoheal1210@gmail.com
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