Epilepsy
What to Expect

What to Expect at the Comprehensive Epilepsy Center

Epilepsy can affect your child’s and your family’s quality of life. It’s not just the seizures that are challenging. It is also the medication side effects, emotional stress and developmental concerns.

We understand. When you bring your child to the Comprehensive Epilepsy Center, our multidisciplinary care team will work with you to address all of your concerns and questions during your first visit and then be with you and your child every step of the way during treatment.

Making an Appointment

It's easy to make an appointment at our clinic. You can call us directly or your child's doctor may refer you.

Contact us to schedule your child's appointment.

On the Day of Your Visit

Arriving at Your Visit

Please bring a complete list of your child’s medications to every clinic appointment, including the name of the drug(s) and the dosage in milligrams.

If you need to cancel your appointment, please call the office as soon as possible, even if you are canceling on the day of your appointment. 

If you arrive late for an appointment, you may be asked to wait until the end of clinic hours to be seen. Please call the office if you are running late so we can let you know if you will have to wait. We may ask you to reschedule your child’s appointment for another day.

During Your Visit

During the initial visit, several members of our specialized care team will meet to evaluate your child. They will include a:

  • Neurologist who specializes in epilepsy care (epileptologist).
  • Nurse practitioner with expertise in caring for children with epilepsy.
  • Clinical psychologist who will screen for learning, attention, development, mood and behavior difficulties.
  • Clinical pharmacist who will recommend and monitor medication for your child.
  • Genetic counselor who will ask questions about your family’s health history and determine if genetic testing is recommended. The results of genetic testing can help the team determine which type of treatment will be most beneficial for your child.
  • Dietitian who will support you if your child adopts a specialized diet.
  • Social worker who will help you address non-medical care needs such as financial assistance or school nurse education. 

Depending on your child’s condition and recent medical history, they may need to undergo testing. This may include:

After Your Visit

Your child’s care team will establish a follow-up schedule for your child after the initial appointment. You are responsible for making your child’s follow-up appointments and scheduling tests unless otherwise specified. You will meet with a nurse practitioner and/or your child’s epileptologist at all follow-up visits.

Urgent Questions or Concerns

If you are experiencing an urgent matter during office hours, please contact us and ask for the “urgent nurse.” If you are calling after hours, call the clinic and follow the telephone prompts, and the answering service will page the doctor on call.

After speaking to the doctor, please call the clinic and leave a detailed voicemail message explaining why you called, and any changes made to your child’s regimen.

Non-Urgent Questions or Concerns

If you have a non-urgent question or concern about your child’s condition, please contact us and ask to speak with your nurse or medical assistant by name. Their names are on the summary you receive at the end of each visit.

If the nurse or medical assistant is unavailable when you call, please leave a voicemail message, and your call will be returned as soon as possible.

We ask that you call the clinic if your child:

  • Has a seizure (if your child has many seizures in between appointments, we will work with you to determine how often you need to call in)
  • Experiences medication side effects
  • Or if you have any questions about your child’s care or condition

Frequently Asked Questions

Your child should take the anti-seizure medications exactly as prescribed. If the medication is prescribed once a day, then give the medication at the same time every day. If the medication is prescribed twice a day, then give it as close to 12 hours apart as possible every day. If it is prescribed three times a day, give it as close to eight hours apart as possible. Your child should always take the medication with food.
Your child must take his or her anti-seizure medication at the same time(s) every day. This will provide maximum benefit from the medication, and help prevent “breakthrough” seizures. Your child’s nurse practitioner will provide guidance about what to do in the event that your child misses a dose.
Please allow one week for medication refills. We will always make sure you have enough refills to last you until your child’s next clinic visit.
Labs will be drawn at most clinic visits. We will contact you by phone with test results only if the results were abnormal.
Consult with your primary care doctor. Some cold medications that contain decongestants can lower seizure threshold (increasing the risk of a seizure). However, this does not happen with everyone, and there is no way to predict whether a seizure will occur. If your primary care doctor feels your child would benefit from a decongestant, then follow that advice. Please note that a medication such as Claritin or Zyrtec without the letter “D” in the name is fine to take. 

Licensed drivers who have been diagnosed with seizures must present the department of motor vehicles with a statement from their epileptologist in order to drive legally. Your child will need this paperwork in order to operate any motorized vehicle, including a car or recreational vehicle such as an all-terrain vehicle or jet ski.

In order to drive, a child must be seizure free and taking seizure medication as prescribed. 

Children with epilepsy can participate in many sports. However, some sports are not safe for children who have certain types of epilepsy. For example, a child who has seizures that involve a loss of consciousness should not participate in swimming. Contact sports including football also can be dangerous. The medical team will talk to you and your child about the risks and benefits of sports participation.
Please allow two weeks notice for school forms, driving forms, Family and Medical Leave Act paperwork, and other forms or letters.
The clinic has a licensed social worker who works specifically with the epilepsy team to assist with patient and family needs. You also can contact a Cincinnati Children’s financial advocate at 513-803-6500 or at FFA@cchmc.org.