Everyday life

When you've been told there is no cure, try to make the most of the time when your child is feeling well as this time is very precious. Choose very carefully how you use this time and be cautious about accepting too many holidays and treats.

Be guided by your child as they may be most happy with short outings to favourite places, or just doing simple things and familiar things at home.

Although you will want to make this time as special as possible, if you are able to, it is important to try and maintain the routines and the good behaviour you normally expect.

Children and young people respond well to consistency and it may help your child and their siblings to feel more secure. You may also want to talk to siblings about allowances they need to make.

Looking after your child at home

You may be concerned about looking after your child at home. Remember that there will always be medical advice available from the team caring for your child at any time that you need it. You may also find it useful to read the booklet Managing symptoms at home produced by CCLG.

Reviewed July 2014, next planned review 2017