Some children with epilepsy are monitored in the community by their paediatric neurologist, paediatrician or, in remote areas, family doctor. Others are monitored by a specialized epilepsy team at a children’s hospital. How involved the care needs to be depends on the type of epilepsy, the success of treatment and the frequency of seizures.
It is important to have your child regularly monitored, even if treatment is very successful and your child is feeling healthy because their seizure situation can change over time. Also, doctors need to keep a close eye on the potential long-term effects of epilepsy and anti-epileptic drug therapy.
Clinic visits are a time to review:
- how well the epilepsy is being controlled
- how the treatment is affecting your child’s and family’s lifestyle
- how the side effects are affecting your child’s learning, emotions and social life
- how lifestyle issues are affecting the epilepsy
The regular visits also provide you and your child with the opportunity to discuss concerns, learn more about epilepsy and become more confident in your ability to make your own adjustments to your child’s routine and lifestyle. The medical team can also help identify any potential personal issues that may affect epilepsy management, or vice versa, and begin to deal with them.
Clinic visits as your child gets older
The needs of children with epilepsy change as they get older. This is why it helps if you and your child can continue to meet regularly with health-care team members. The relationship that you develop with your health-care team over the years can help offer you support during more difficult times.
At many children’s hospitals, a child may continue to be followed by a paediatric neurologist until they are 18 years of age. When they turn 18, they will need adult care. Your child's neurologist will be able to tell you what to expect in terms of visits and how to transition to adult neurology care.
How often will your child need to be evaluated?
If your child’s seizures are well controlled, then they may require a visit to the neurologist or paediatrician only once a year. If your child has infrequent seizures, then it is likely the doctor will suggest a couple of visits per year. If your child has frequent seizures that require medication changes or potentially new treatments, then the visits may be as frequent as four to six times per year.
Why might your child’s epilepsy become worse?
Sometimes epilepsy may worsen or change. Your child’s seizures may increase in frequency or intensity or may change in type. This could be related to:
- a recent change in medication
- the need for an increase in dosage because your child is growing and has gained weight
- the need for a change in medication because your child has reached puberty
- medication tolerance: your child’s body got used to the medication, or the dose of medication, so it is not working as well
- a worsening or progressing of the underlying condition that has caused epilepsy
- a change in the type of epilepsy
What should you do if you are worried about symptoms?
Ask your child's neurologist or paediatrician what symptoms to watch out for in the short and long term. Even young children can sometimes describe what their seizures feel like or what parts of their body are involved. However, the responsibility for observing seizure symptoms often rests with the parents or school staff because with many seizure types, the person is not able to recall what happened during the seizure. The person may, however, remember an aura or warning before the seizure.
If your child is a patient at a children’s hospital and is experiencing a change in seizures that concerns you, then you can contact the clinic nurse in the epilepsy clinic and outside regular business hours, there will be a doctor on call. Ask a member of the epilepsy care team for the contact information. The clinic nurse can help you to understand when your child should come in to see the doctor.
If your child is being followed in the community, talk to your child’s doctor about when and how to contact them if you are concerned.
In the case of status epilepticus (a seizure that continues for a long time (more than half an hour) or a child has several seizures without time to recover between them), you should call 911 and have your child brought to an emergency department. For other urgent care needs, you may also need to bring your child to the emergency department.
What happens during a clinic visit?
At clinic visits, the epilepsy team may ask you and your child about:
- your child’s seizures (current types, seizure frequency, duration, timing, intensity)
- medications (dose, timing, frequency, effect on seizures, side effects)
- your child’s physical health, growth and development, including the progression of puberty
- sleeping patterns
- behavioural and emotional issues, including any stress in your family and the ways in which you, your family and your children are adjusting to the epilepsy
- learning and school status, attendance and performance
- if your child is a teen, issues such as smoking, alcohol and drug use, sexuality and sexual exploration, and eventually, transition to adult care
- any other issues relevant to your child’s epilepsy
At a paediatric tertiary care centre, a neurologist, neurology fellow, resident or nurse practitioner will likely examine your child. The physical assessment usually includes height, weight and head circumference measurements to make sure that your child is growing well, as well as a neurological examination.
Based on this assessment, your child’s doctor or another member of the epilepsy team will then discuss with you:
- continuation of the same treatment plan
- changes in medication dosages or medications
- further tests or investigations
- other treatment options, such as vagus nerve stimulation (VNS), the ketogenic diet or epilepsy surgery
- services or resources in the community that you feel your child needs
- letters or forms to be completed for resources or services in the community, as needed
Getting the most out of the visit with your health-care team
Over the years, the family dealing with epilepsy will become quite familiar with the health-care system. Remember that the epilepsy team is there to support your family with epilepsy care. Here are some tips on how to get the most from your health-care team.
Before the visit
- Write out questions and concerns so you won’t forget things.
- Write down any recent symptoms.
- Keep self-monitoring records current.
- Review what medications and dosages your child is currently taking.
- Review the main points you want to cover.
- Talk to your child about questions they may want to have answered during the visit. This is a good way to have your child involved in their own health.
Parents often find it helpful to keep a diary that records their child's seizure patterns, tests undergone, results of tests and other related information. This can be helpful in recalling information during a clinic visit or a trip to an emergency unit. A seizure diary is especially helpful during times when your child’s seizures may be changing in type, intensity or frequency. The information you record can help the epilepsy team decide on the best treatment. If your child’s seizures are relatively stable, specific seizure recording may not be necessary. It is a good idea to ask your health-care team what kinds of documentation might be helpful for them. For example, in some situations, a video recording of your child’s seizures may be useful.
During the visit
- It is helpful to bring your notebook or device in which you keep track of seizures, medications, the dosage and any adverse effects from the medications.
- Bring any videos of your child’s seizures you may have.
- Request time to ask questions.
- Consider bringing a family member or friend who can be a second set of ears.
- Encourage your child to participate in the visit and ask their own questions, if possible.
- Write down the answers.
- When answers seem detailed or complicated, it may be helpful to repeat answers back to the health-care provider to make sure you understand.
- Make a specific plan of action for any changes to the medication routine.
- Make an appointment for the next visit.
- Ask if blood tests, or any other tests, should be done.
- If needed, ask for a refill of your child’s anti-epileptic medications during the clinic visit.
After the visit
- Write down the recommendations given.
- Decide how to implement them.
- Tell the rest of the family.
- Phone to get results from any other screening tests.
Talk about any of your concerns at the clinic. However, if you have any concerns or your child is having symptoms between clinic visits, give the treatment team a call.
As your child gets older, they may play a greater part in the clinic visits and discussions. As a pre-teen/teen, the health-care team may want to speak with them in private for part of the visit.
You will need to be your child’s advocate, be assertive and get them the best possible care. Some tips:
- No question is "too dumb." It is your right to know about your child’s condition and to be a part of the care team making the treatment decisions. You have a right to have all questions related to your child’s epilepsy fully answered. If something doesn’t make sense to you, ask the doctor or nurse to explain it again.
- You know your child best. The neurologist and the team are depending on your experiences with your child to provide them with important information that will lead them to make decisions about treatment or tests. Trust your instincts about what your child needs and share this with the health-care team.
- If you are finding that you have a poor rapport with your child’s doctor or feel uncomfortable about the kind of care your child is receiving, it is important that you discuss this openly with the doctor. If you are unable to reach agreement on how your child should be treated, then you can ask the doctor to refer your child, either for a consultation or a second opinion, or to another neurologist for care. Because epilepsy is a chronic condition and one that may change along the way, it is important that you find a neurologist with whom you feel comfortable and are confident that they are doing the best they can for your child.