Seizure Preparedness Plan

Because seizures can happen without warning, it’s best to have a plan in place so you’ll know what to do when an episode occurs.

What to Do When Your Child Has a Seizure

•    Stay calm.
•    Do not try to stop the movements.
•    Clear the area around your child of any hard, sharp or hot objects. If walking around, gently lead your child away from hard, sharp or hot objects, doors or stairways.
•    If your child is lying down, pillows or blankets may be used to pad items that cannot be removed. An item that is flat and soft should be put beneath the head.
•    Do not try to put anything between your child’s teeth or in your child’s mouth (so they do not aspirate their secretions into their lungs).
•    For a tonic‐clonic seizure, gently roll your child onto one side until he/she is fully awake.
•    Stay with your child until the seizure is over and your child can answer questions such as “Who am I?” or “Where are you?”
•    Allow your child to rest if he or she is sleepy. Check on your child frequently.

Your child’s doctor may recommend a rectal form of medication called Diastat Acudial. This can be used at home to stop a seizure that lasts longer than five minutes or three seizures in one hour. If you do not have this prescription, ask your doctor if this would be helpful for your child.

Go to the emergency department or call 911 if:

•    The seizure lasts longer than 5 minutes and there is no Diastat available.
•    The seizure is followed by more seizures and your child does not wake up in between seizures.
•    Your child has trouble breathing, seems hurt or is in pain.
•    Your child’s color appears bluish or gray during or after the seizure.
•    Your child has diabetes or may be pregnant.
•    The seizure occurred in the water.

Please bring your child’s medication bottle and have the name of your child’s neurologist and clinic phone available for the emergency providers.

Call your child’s neurologist or doctor if:

•    Your child’s seizures have increased in frequency.
•    Your child has experienced a new type of seizure.
•    Your child has side effects from the AEDs.
•    Your child developed a rash after starting new AEDs.

Use the following list of questions to help record the seizure and share this information with your child’s neurologist.

1.    How did your child act before and after the seizure?
2.    Were there any warning signs that the seizure was starting?
3.    What happened during the seizure?
4.    Was one side or part of the body more affected?
5.    Did it start on one side of the body and affect the other side?
6.    Did the head or eyes turn to one side during the seizure?
7.    How long did the seizure last?
8.    How long did it take your child to return to normal?
9.    Was one side of the body weaker after the seizure?
10.    Did your child pee or poop during the seizure?

Illness in your child may cause a breakthrough seizure. A breakthrough seizure is a seizure that occurs in a child whose seizures had previously been well‐controlled. If your child is sick, please share this information with your neurologist because it may influence his or her decision to adjust your child’s AEDs.

Travel Checklist

Enjoyable, safe travel starts with planning before you leave home. Here are some suggestions for easier travel with a child who has epilepsy.

Be sure to do some advance planning.

•    Call the airlines and explain your needs. Ask what they provide. Ask about the rules for carry-on medicines, such as Diastat.
•    If you are traveling to theme parks or other locations, call and ask what help they can provide.
•    Pick out snacks, books or toys with your child to help them enjoy the trip.
•    Put together a packet that has phone numbers you may need, such as:

o    Your child’s primary care provider
o    Your child’s neurologist
o    Your pharmacist
o    Emergency family contact who knows your child’s medical history
o    The nearest pharmacy and hospital in the place you are visiting

Prepare your child’s medicine.

•    Be sure to have prescriptions filled and picked up before you leave home.
•    Pick up your medications 2‐3 weeks before the start of your vacation to be sure you have enough to take with you.
•    If needed, call your insurance company to see if they will give you advance doses so you will not run out.
•    For air travel, carry two supplies of medicines with you. Put one in your carry‐on and the other in your checked baggage. If your child uses Diastat, keep this in your carry‐on bag.
•    Carry a written list of medicines and doses. This is called a Home Medication List.
•    Bring your pharmacy phone number from home. If needed, they can help you with possible insurance issues at a new pharmacy.
•    If your child is not using a rescue medicine now, such as Diastat, call your nurse or doctor to see if it is needed for the trip.

Prepare for the event of an emergency.

•    Ask for and carry a current emergency care plan signed by your care provider.
•    Your child should wear a medical bracelet or necklace stating that they have epilepsy. Also include any allergies on the bracelet/necklace.
•    Everyone traveling with your child should know first aid. Know what to do and what not to do during a seizure and know how to describe the seizure.

Take precautions if your child has a vagal nerve stimulator.

•    Carry the registration card with you in case it is needed at the airport.
•    If an airport or tourist attraction requires security screening, ask to have your child manually searched. This will avoid setting off the security screening device.

Plan ahead if your child is on a ketogenic diet.

•    Ask to have a refrigerator put in your hotel room to store special diet foods.
•    Make enough meals to have on hand during the time that you are traveling. Plan extra meals in case you are delayed by weather. Be sure to take an insulated carrier and enough cooling packs to keep food that you are carrying safe.
•    For travel out of the country, you will probably need a letter from the doctor to take foods/liquids for the diet in and out of the country.

Take additional precautions once you arrive at your destination.

•    Check for the location and phone number of a pharmacy and hospital near you.
•    Call ahead for advance seating at restaurants and local attractions.
•    Have a hospital bag put together ahead of time so that you will have everything you need if an emergency happens. Include a change of clothes, money, the emergency care plan and your care notebook or notes about your child’s care.
•    If you need to visit the emergency room while on vacation, the following tips may help make it a smooth visit:

o    Carry an emergency care plan from your care provider. The plan should include the doses of emergency medicines already calculated for your child’s weight. This care plan should be signed by your care provider.
o    Bring your child’s medication list, including dosage and formulation.
o    Bring notes on what has been done in the past to control your child’s seizures. Include information on what has not worked for your child.
o    Speak up for your child. You know your child’s care best.
o    Bring your care provider’s contact information with you.