Our Helpline & Information Officer, Stuart Macgee, provides information to help parents deal with their child’s diagnosis of epilepsy.
A child’s diagnosis of epilepsy can be difficult on the whole family.
Many parents we talk to via our helpline, talk about feeling as if their world has been turned upside down.
It is completely normal to feel disbelief, sadness, anger or even guilt when a child is diagnosed with epilepsy. Give yourself time to adjust, ask questions and arm yourself with lots of information.
Don’t be afraid to get help for yourself from your own GP if you need to. Your child’s epilepsy specialist nurse also understands what you are going through and will be able to provide support.
If you want to talk to someone, please call our freephone helpline on 0808 800 2200.
Dealing with people’s reactions
Before you talk to other people about your child’s epilepsy, make sure you have processed and understand your own feelings and emotions.
Choose who you talk to about your child’s epilepsy, such as teachers and those looking after your child, but not everybody needs to know everything.
An older child will also want to have a say in how much is disclosed to others, and this needs to be dealt with sensitively.
Most people will want to be supportive, but they may not know much about epilepsy.
Encourage questions and signpost them to websites such as Epilepsy Scotland’s if they want to find out more.
Effect on siblings
Siblings may also feel confused, upset or angry, particularly if a lot of their parents’ time and attention is initially taken up with going to medical appointments and looking after their brother or sister.
Make a point of spending time with each of your children on their own giving them an opportunity to talk about how they feel and ask questions they may be too frightened or embarrassed to ask in front of everyone else.
They may want to learn some basic first aid, so they are able to help their brother or sister. If your family needs further help, talk to your GP who can make referrals to family and other counselling services.
There is also help available from Relationships Scotland offering counselling services for couples and families.
Specific support to siblings of disabled children and adults is available from the charity Sibs, 01535 645453.
Effect on your relationship with your partner
And finally, looking after a child with epilepsy, particularly if the child also has other health conditions, can be time consuming, and exhausting.
This can sometimes change the relationship with a partner. If you want to talk to someone in confidence for further help and support, contact Relationship Scotland as above.
For more information on any of the above issues, please contact Epilepsy Scotland’s confidential freephone helpline on 0808 800 2200.
