At some point, a teenager with epilepsy, or any chronic condition, needs to transfer management of their condition from a paediatric care setting to an adult care setting. Although this usually happens by the time the teen turns 18, preparations should begin much earlier.
The paediatric neurologist will refer the teen to an adult neurologist. When meeting the new neurologist, it will be important to discuss:
- the teen's needs with respect to seizure management
- any changes in treatment
- how often they need to have check-ups
- any precautions to take
Adult care will focus on meeting physical needs (seizures, anti-epileptic drugs) and monitoring their effects on such things as birth control, pregnancy, sexual drive, driving a vehicle and so on.
This transition can sometimes be quite emotional and stressful for teens and their families. Moving on to a new health-care setting is like graduating from high school to college or university. Over a short period of time, the teenager shifts from being the biggest, oldest and wisest person to being a young, inexperienced rookie in a larger and different environment. Some find the experience exciting. Others prefer the security of the old setting. Many young adults have told us that they feel more rushed in the adult system and describe the care as less personalized due to shorter appointments. Getting used to this approach usually requires time to adjust and time to get to know the adult health-care team and the way that they provide care. Once it is clear how the health-care team functions and the amount of support they can offer, young adults can adjust their expectations accordingly.
A major difference between the paediatric care team and the adult care team is one of expectations. In the adult system, young adults are expected to gradually take more responsibility for their care. This new demand can sometimes be overwhelming, and a young adult may feel anxious about meeting it. It may also be tempting to forget about the condition, especially if there have not been any recent seizures. Some young adults drop out of care altogether, which is not good for their health.
Another difference is that some adult care settings provide less attention to the psychosocial dimensions of care than to physical care. Young adults and their families may need to actively seek support from the new neurologist to ensure they receive community or social services that match their special needs. These may include completing long-term disability forms, writing letters for school programs identifying any special needs, or psychiatric or mental health consultations.
Why continuously monitor the condition?
Epilepsy is a chronic condition and therefore requires on-going monitoring and management by a physician with special expertise. Seizure patterns may change with age: seizures can become more or less frequent. An increase in seizure frequency can mean a change in medication dosage, a different medication or trying a different treatment. Conversely, if a person has been seizure-free for several years, it may be time to consider reducing and stopping the medication. It is also necessary to watch for other problems associated with having epilepsy or side effects of medications and to address these issues early. For example, some anti-seizure medications, such as phenytoin, can increase bone loss over time or cause inflammation of the gums.
Encouraging a smooth transition to adult care
Ideally, parents and caregivers can begin discussing the transition to adult care and encouraging their child to gradually take on more responsibility for their epilepsy care when they are in their early teenage years (13 to 14 years old). Encourage your teenager to check out the Epilepsy Checklist for Teens and learn what they need to know about epilepsy. The paediatric epilepsy care team should also help your child to get more involved in their own care. Some paediatric hospitals have transition programs that help teens with chronic health conditions take on more responsibility for their own care, learn to advocate for themselves and prepare for the transition to adult health care.
Suggestions for parents and caregivers
Early preparation can include helping and encouraging your teen to adopt a healthy lifestyle, including regular eating and sleeping habits, physical activity and avoiding alcohol and drugs.
Some other suggestions for easing the transition:
- While they are still with the paediatric epilepsy care team, encourage your teenager to gradually take more responsibility for dealing with the team themselves. This could include setting up appointments and bringing a list of questions to the clinic visit. This will give them practice and confidence for dealing with the same things in the adult environment.
- However, do stay involved with your child’s care. Be aware of what is going on and be on hand to give them whatever support they may need. Be prepared to act as a backup if they ask for help or seem to be getting overwhelmed.
- Allow your teen private time with the paediatric epilepsy care team.
- Discuss with your teen the importance of continued care in the adult setting. Involve the paediatric care team as necessary.
- With your teen, ask the paediatric epilepsy team to suggest an adult care team or clinic and to transfer all pertinent information to them.
- Some children with epilepsy may have other disabilities for which they may be accessing support services. Many of these services are only for children and may not continue when the child turns 18. A social worker on your child’s medical team can help you understand these and can help you apply for services available to adults.
Suggestions for teens
- Adopt a healthy lifestyle. This includes regular eating and sleeping habits, physical activity, and avoiding alcohol and drugs.
- While you are still with the paediatric epilepsy care team, try to gradually take more responsibility for dealing with the team by yourself. Set up your own appointments, write down questions ahead of time and discuss issues and concerns that are important to you.
- At each appointment, ask for time to speak with the paediatric epilepsy care team about sensitive or private issues without parents present.
- Understand how epilepsy and its treatment affect you. Ask questions and keep your own records about your condition and treatment.
- With your parents, ask your paediatric care team to suggest an adult care team or clinic and to transfer all pertinent information to them.
- Remember that your parents are still there to act as a resource and backup if you need them. Don't feel that you have to do everything by yourself.
For more information for teens about this transition, please see Transitioning through health care as a teenager: Timeline.
Getting help from an advocate
Once a teen is a young adult, it may not always be possible for a family member to go with them to appointments. If they need extra support during appointments—for example, if they have memory problems—an advocate from the local epilepsy association may be able to help:
- Before the appointment, an advocate might get information from the young person or their family about seizures, medications and questions for the health-care provider.
- During the appointment, the advocate might support the young person by sharing information with the health-care provider and making sure the young person’s questions about medications, side effects, other treatment options and lifestyle issues are fully addressed.
Check with your local epilepsy association to see if an advocate is available.