banzel connections

Be prepared with a seizure action plan

Before you choose a place for your child to attend, it’s important to develop a seizure action plan. This plan describes what steps to take if a seizure occurs.¹ It’s formulated by the patient, the family, and the healthcare team.¹ The plan is useful for people who may not be as familiar with your child’s care as you are.

A seizure action plan includes²:

• A description of what your loved one’s typical seizures look like
• Instructions on how to handle specific seizures
• Names and doses of all medications your child takes
• Instructions on when to bring the child to the emergency room
• How to use the vagus nerve stimulator battery, if your child uses one

In addition, seizure action plans should include contact names and numbers of family members and healthcare providers.²

Sample seizure action plans are available at the Epilepsy Foundation Web site. With a plan in place, you can feel more confident that your child’s medical needs are properly taken care of when he or she is in the care of others for one day or a longer period of time.

Finding outside activities for your child

There are many facilities that have recreational and educational opportunities for your child. To find one that meets your needs, you can look at what programs are offered by your local YMCAs or YMHAs, family service organizations, the Special Olympics, or music organizations. In addition, check out these resources:

• The LGS Foundation has information regarding education, safety, and help for caregivers
• Exceptional Parenting Magazine has lots of ideas about activities, education, and socialization for people with all types of disabilities, including LGS
• American Association of People with Disabilities Web site contains information and ideas regarding socialization and assistive technology

How do I travel with my child with LGS?

It’s important that you pack as much medicine as is needed for your child when you’re away from home. Of course, this may be difficult if your child is taking several different drugs. If you are traveling by air, be sure to pack medication in your carry-on luggage. Also, in case of delays, pack extra medication.³

If you are traveling between time zones, it is best to ask for your doctor’s advice on when to give your child his or her medicines.³

Always bring your seizure action plan.

In preparation for trips, it is often helpful to prepare pictures for the person, either online or in a book, outlining what will happen, where you are going, and what you will do when you get there. This is useful to decrease your child’s anxiety, especially if he or she has difficulty understanding language and is fearful in new situations.

Don’t forget the seizure plan!

Anytime your child goes somewhere for an extended period of time, or whenever he or she is out of your care, you should provide a copy of your seizure action plan.¹ For instance, a copy should be taken on class trips, on overnights, and to camps. Grandparents, babysitters, neighbors, friends, and relatives should all have copies of your seizure action plan.

With a little planning and a well-thought-out seizure action plan, you can rest assured your child’s medical needs are understood and met while he or she is experiencing opportunities outside the home.