Our Youth Development Worker, Kirstyn Cameron looks at the transition from childhood into adulthood and the affect this can have on a young person with epilepsy.
For many children, their epilepsy will continue into adulthood. During their transition time from childhood into young adulthood seizure frequency and patterns may change, which may be linked to hormone levels.
Transition to adult hospital services
Transfer to adult epilepsy services will usually happen around the ages of 16-19, or when a child leaves school.
A child aged 15 or 16 at diagnosis will often be referred directly to an adult neurologist cutting out the transition phase.
The move to adult services can be unsettling as it disrupts the usual routines and familiar faces. It can also mean travelling to a different hospital.
However, some hospitals have a transfer clinic where families can get to know medical staff of the adult team.
Also, transitioning into adult epilepsy services is usually a good opportunity to review a child’s epilepsy care and medication taking into account all the physical, emotional and psychological changes that are happening to a child.
Any child attending a teenage clinic will be entitled to see their consultant or other specialist without their parents and make their own decisions about their health.
Teenagers will want to make their own lifestyle choices and develop their own interests.
To help a child make informed and balanced decisions they need to be aware of possible seizure triggers, particularly the risk of not taking their medication, or taking drugs and drinking alcohol.
An older child may prefer to talk about these issues with an epilepsy specialist nurse rather than their parents.
Teenage girls also need to start thinking about contraception and pregnancy. They need to be on the right contraception, which does not interfere with their anti-epileptic drugs and vice versa.
An epilepsy specialist nurse will be able to advise further.
Any young woman thinking about starting a family should speak to an epilepsy specialist nurse first to make sure they are on anti-epileptic drugs which do not harm an unborn baby.
Becoming more independent
A child will want to become more independent as they grow into a young adult and may want to go to university or move away from home for good.
Even a young adult with more complex needs will want to gain their independence.
Some parents may no longer be able to look after an adult child with complex needs, particularly as they get older and if they develop their own health problems.
The kind of accommodation available for adults with complex needs varies from supported housing to mainstream housing which has been adapted and made accessible.
A local authority will have a Supporting People Team, which looks after adults needing help and support with living independently.
A social worker will be the first point of contact to discuss the various options available.
Some voluntary and private sector organisations also provide support for people independent living. It is worth doing some independent research on this.
Learning to let go
As a child grows into a teenager and young adult, parents need to gradually hand over responsibilities to their child and others.
This will be a process of slowly building trust between a parent and child over time.
By being supportive and encouraging a child to assume responsibility for their own life, parents will help their child become as independent as possible.
Our teenagers guide helps teenagers and young adults understand epilepsy. It can be downloaded here.
For more information regarding epilepsy and young adults, please reach our transition into young adulthood factsheet.
Or please contact our freephone confidential helpline on 0808 800 2200.