Person with Epilepsy Talks about Transition in Epilepsy Care

What is transition of medical care?

  • Transition of medical care is a process when teenagers prepare to progress from pediatric to adult medical care.
  • Ideally, this is a ongoing and gradual process during which education on your epilepsy is provided and readiness for transition is repeatedly reviewed with the patient.  
  • The goal of the transition process is to help teens improve self-management of their medical condition(s). 

Why is the transition process important?

  • As a group, teenagers tend to have one of the lowest rates of medical service utilization, which means they may not go to the doctor regularly.
  • This is especially problematic for teens with chronic diseases like epilepsy, as it is critical for them to develop effective self-management skills.  
  • Many teenagers with epilepsy have other medical and psychiatric comorbidities (or conditions) which may lead to greater challenges during the transition process.
  • Transition can also be a time of stress for patients and their parents or caregivers. This is why addressing these concerns early and often can improve transition outcomes by enabling teens to learn how to independently manage their epilepsy.  

Important Topics to Learn During the Transition Process

  • Developing a clear understanding of your seizures and medical history, including what testing you have had done, and possible side effects of your treatments.
  • Reviewing your Seizure Action Plan and who to call if seizures get worse. 
  • Addressing chronic or newly-identified emotional or psychiatric disorders. 
  • Discussing plans for continued medical coverage/insurance.
  • Identifying an adult provider and planning for transfer of medical records. 
  • Determine whether any academic support will be carried over to college. 

Medical History

  • It is important to know your medical history. This includes knowing what your seizure disorder is called, what type of seizures you have, being able to describe what your seizures look like, and what triggers may worsen your seizures.
  • You should also know what medications you are taking (names, doses and when you take them).  
  • It is also important to know what your Seizure Action Plan says. Some people have medications that can be given to try to stop a long seizure or clusters of seizures. It will be important for you to know how and when this is to be given so you can let those around you know should you have a seizure that needs rescue. Learn more about rescue medications.
  • During the transition process, you should review what tests you have had, and what the results of those are, to better understand the cause (if known) and prognosis of your epilepsy. It is also important that you know your other medical history, such as if you have a bleeding disorder, or other disorders.

Managing Your Medications

  • As stated above it is important to know your medications (names and doses). With your parents help at first, you should start requesting your own refills from the pharmacy.  
  • Don’t wait until you take your last pill before requesting a refill. Sometimes insurance needs to pre-approve a new supply or the prescription may have expired and the doctor may be away for a few days. Always try to call in for a refill no later than when you have 5-7 days left of medication. 
  • When transitioning to a new adult neurologist, it will also be important to know the names of the other seizure medications you have tried previously and why you no longer take them. Ask your current neurologist for this information before to transitioning.
  • Become familiar with what your pills look like and how many pills of each medication you are supposed to take. Take your medications every day as prescribed.   
  • If you need help remembering to take your medications, use a pill box to set up your pills for the week. Use an alarm on your phone or other device to help you to remember to take your medications.  
  • Remember missing a dose of medication can trigger a seizure to occur, which if you have been able to drive, would make you not be able to drive for the designated time for your state. Make sure you know what to do if you forget a dose or accidentally double up on a dose of medication. 

Driving

  • Know the laws in your state for how long you need to be seizure free before you can drive. Check with your state’s DMV. 
  • If you drive during the time you are not supposed to and are in an accident, you may be liable for damages and perhaps more. 
  • Learn more about epilepsy and transportation.

Appointments and Contacting Your Medical Provider 

It is a good time to start learning how to call your provider’s appointment office to schedule your appointments and to learn how to call your provider if you have questions about your seizures or medications.

Living On Your Own

It’s always a good idea to think ahead about what it will be like to live on your own if that is in your plan. You will need to be responsible for making healthy choices to help keep your epilepsy under as good of control as possible. 

This includes maintaining a regular sleep schedule so that you do not end up sleep deprived and avoiding substances that can lower your seizure threshold, mainly drugs and alcohol. It may be tempting to try these out if you see your friends doing this. It’s a good idea to think about all the good reasons not to try these. A big reason is that you will not increase your risk of having a seizure if you do not have drugs or alcohol!

If you currently smoke, start working on a plan to quit smoking with your health care team. You can review the resources from the Centers for Disease Control and Prevention with your provider to start your quit plan today. Learn more about smoking and epilepsy.

Special Considerations for Women

If you are sexually active, it is very important to be aware of the risks to you and your baby should you become pregnant. Some anti-seizure medications can be harmful to your baby while you are pregnant. If you are sexually active it is best to talk to your doctor about using 2 forms of birth control to help avoid an unwanted pregnancy. 

If you are going to be taking birth control, let your provider know because many of these medications can interact with anti-seizure medications and may either cause the seizure medication or the contraception to be less effective. 

Learn more about living as a woman with epilepsy.

Turning 18

When you turn 18, you legally become an adult.  You will have to give permission for your health care team to be able to speak to your parents if you would like them to be able to discuss your medical history. So, be aware there may be some forms for you to fill out once you turn 18. If you are going to have your parents or someone else make your medical decisions for you, the process of obtaining guardianship will need to be completed through your local courthouse. 

Authored By: 
Teresa Cook RN
Eva Alden PhD
Authored Date: 
11/2020
Reviewed By: 
Elaine Wirrell MD
on: 
Monday, November 30, 2020