Epilepsy: Transition to adult health care

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A teenager with epilepsy will need to transfer management of their epilepsy to an adult care setting. Find out about transitioning smoothly from paediatric to adult care.

Key points

  • Adjusting to an adult health-care setting can take time and may bring many changes including different expectations of the patient.
  • It is important to continue seeking medical care for epilepsy into adulthood as the condition may change over time, and your child will need to be monitored for potential side effects.
  • Parents should encourage their child to start managing their own health care in their early teens, so that they are better prepared for the transition to adult health care.

At some point a teenager with epilepsy, or any chronic condition, needs to transfer management of their epilepsy from a paediatric care setting to an adult care setting. This usually happens when the teen turns 18, but preparations should begin 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 all involved. Moving on to a new health care setting is like graduating from high school to college. 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.

Another difference, in our experience, 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 side effects of epilepsy or medications and to address these issues at an early stage. For example, some anti-epileptic drugs, such as phenytoin​, can increase bone loss over time or cause inflammation of the gums.

Encouraging a smooth transition to adult care

Ideally, parents 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

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 discussing and resolving issues. 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 seems 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 your paediatric care team to suggest an adult care team or clinic and to transfer all pertinent information to them.

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, take some time alone with the paediatric epilepsy care team to discuss sensitive or private issues.
  • Understand how epilepsy and its treatment affects 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.

To guide you in finding out what you already know about epilepsy, and what you need to learn more about, check out this resource:

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. For example:

  • Before the appointment, an advocate might obtain information from the young person or their family regarding seizures, medications, and questions for the physician.
  • During the appointment, the advocate might support the young person by providing information to the physician and ensuring 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.

Last updated: February 4th 2010