Most children with epilepsy and their families are able to travel nearby or abroad. Most children are also able to attend day camps and overnight camps. However, careful planning is necessary to ensure a safe and enjoyable holiday.
Tips for safe travel
Talk with your child’s epilepsy team
- If you are planning a long trip, or a trip to remote regions or very far from home, you may want to meet with the doctor or members of the epilepsy care team at least four to six weeks before you leave.
- Ask the epilepsy team about:
- how much medication to bring
- how best to stick to medication schedules when there is a time zone change
- how to store medication in hot or cold climates
- how to contact the team in case of emergency
- which doctors to contact while travelling
- which doctor or hospital to contact at your destination
- any other concerns you may have
- If you are planning to travel overseas, ask which vaccinations are needed and how they might affect your child or interact with their medications.
Understand the effect of travel on your child’s health
- Make sure your child is well rested before travel.
- Try to keep your child on a regular schedule of eating and sleeping to minimize the stress and fatigue of travel. Fatigue can place some children at a higher risk of getting a seizure.
- Understand that travel to different time zones may require changes to your child’s medication and sleep schedules.
Be prepared if your child needs medical care
- Find out about your child’s medical insurance coverage at your destination. Arrange for coverage beforehand. Ensure that your travel insurance abroad covers your child’s pre-existing medical condition.
- Ask the epilepsy care team or your child’s doctor for a letter that summarizes your child’s condition and treatment, including medications. Keep this letter on hand to show when you need medical care during your travels.
Organize medications
- Bring enough anti-epileptic medication for the entire trip as well as an extra supply of medication just in case.
- Keep the extra supply separate from the main supply in case one of your bags is lost or stolen.
- If you are taking a plane, make sure all the medication is in your carry-on baggage. Keep all medications in their original, labelled bottles or packages. The label should include your child’s name, the name of the medication and the name of the doctor who prescribed it.
- Bring a letter from your doctor in your carry-on baggage explaining your child’s condition and the medications they need. You can also ask your pharmacist for a printed list of all your child’s prescribed medications. This list should include how much needs to be taken and when it needs to be taken.
Be prepared for emergencies
- Take the phone numbers of key members of the epilepsy care team and any names of experts or clinics in your holiday location.
- Know how to manage a seizure. Know who and what numbers to call in case of emergencies.
- Make sure your child wears some form of epilepsy identification, such as a MedicAlert bracelet.
Epilepsy and camp
Day camp
The preparation for day camps is similar to preparation for a family day out or a day trip at school.
Meet the camp director and counsellor before the start of the camp session to inform them about your child’s condition. You may want to talk with them about:
- what epilepsy is
- what a seizure is
- what to do in case of a seizure
- medication your child needs to take through the day
- specific assistance your child may need
- when to phone you
- important contact phone numbers
- possible triggers for your child’s seizures and how to avoid them
Find out the types and levels of activities your child will be participating in so if there are any specific safety requirements that you need to share with the staff, you can do so. Most safety requirements are important for all campers to follow.
Ensure your child has a place to rest if they should need it. If your child experiences a seizure at camp, this is a time they may require some rest afterwards. They may wish to rejoin activities as soon as they are able to. Some children may have physical or behavioural limitations that require extra staffing support to ensure safety and to support their participation in the camp. In such circumstances, some camps may have the option of assigning a staff member (sometimes called an inclusion or integration worker) to support your child. This may involve an extra cost.
Overnight epilepsy camp
Overnight camps are also an option for your child. To provide a happy and safe camping experience and to provide children with epilepsy the opportunity to meet with others who also experience seizures, some epilepsy organizations have set up camps especially for children with epilepsy. For example, Epilepsy Ontario organizes the "Summerfest" camp each summer. These camps usually have trained staff members on site who are experienced in the care of children with epilepsy, including doctors and nurses.
These camps give children the opportunity to spend several days or weeks with other campers who also have epilepsy. Many campers are excited to be with other campers who are experiencing the same condition and associated issues. For some children, especially those from smaller communities, this may be their first experience of not being the only child with epilepsy. Everyone at the camp understands about epilepsy, so children feel there is no need to be embarrassed. This type of environment gives children a chance to openly express themselves, not be embarrassed about their condition, and safely enjoy their camping experience.
Children are not the only ones who benefit from a camp dedicated specifically to children with epilepsy. Many parents find comfort in knowing that their children are in the care of competent staff who are familiar with seizures and will support their child in terms of safety, social and emotional issues. With such a support system, the children can enjoy the full range of camp experiences, including swimming, boating, trekking, crafts and drama, without the responsibility of managing their epilepsy care alone.
Apart from camps for children with epilepsy, there are also camps for children with chronic conditions that you can explore: www.camps.ca/special_needs_camps.php
Overnight camp
Some children and teens prefer to attend camps that are not specifically aimed at serving campers with epilepsy or other chronic conditions. This may be an option for your child. Some planning and simple guidelines will help ensure a safe and happy camping experience:
- Before camp begins, meet with the camp director and staff to inform them about your child’s condition, including a list of medication(s) being taken and their schedule, a list of instructions explaining what to do in case of a seizure, pre- and post- seizure symptoms, and noticeable side effects of medications.
- Make sure that the management and staff of the camp have procedures in place to handle medical emergencies and that they understand what counts as an emergency for your child. Also, talk to your epilepsy team to determine the maximum distance away from camp a doctor or clinic can be in the event of an emergency.
- Your child should already be responsible for their day–to-day care and should be able to practice this at home. They should be willing and able to take their medications on schedule and assume a healthy lifestyle, with adequate sleep and food. However, depending on the age of the child and the specific camp, some camp administrators may be prepared to give your child their medications or any other support they may require.
You can find out about different camps for your child from the epilepsy care team, school, "local" epilepsy association, other parents, and "local" camping organizations. Many camps also offer subsidies, which can assist with the cost of camp registration fees. Inquire directly with the camp you are interested in, as the application process may be different across programs. It is best to start exploring summer camp options in the winter/spring as this is often when camp registration takes place and subsidy applications are due.