Epilepsy and Activity Restrictions

After overcoming the initial shock of an epilepsy diagnosis, one of the next things to come to terms with is all of the physical activity restrictions you have to impose upon your child. Kids with epilepsy are subject to activity restrictions that can impact their childhood.

A seizure action plan (SAP) is a packet of papers you receive from your child's doctor. In the SAP, it details the type of epilepsy your child has, the medication(s) they are taking, common seizure triggers for your child, and other information about caring for your child with epilepsy. One of those pages on the SAP will have activity restrictions for your child. Your child's teachers and other caregivers need to be aware of these activity limitations.

The activity restrictions can be heartbreaking for a parent.

Absence seizures are brief, quiet, seemingly innocent periods of...well, absence. Many people call them staring spells. When my daughter has an absence seizure, she will stop talking mid-sentence and stare off for a few seconds. A staring spell doesn't seem so bad, but my daughter has no recollection of what happens during those brief moments.

An absence seizure on top of a 6-foot horse could be catastrophic if a child were to fall off or tangle their legs in the reins. An absence seizure while swimming could cause my child to inhale water and wake up in panic underwater, not knowing what is going on.

An absence seizure mid-air on a trampoline could cause my child to fall incorrectly and sprain an ankle, or worse. A staring spell while balancing on a tall balance beam or dangling from the monkey bars could cause my child to fall and hurt herself.

These are the types of activities you don't think of until your doctor starts spelling out all of the things your child CAN'T do.

As a parent, we want to make the world accessible to our children. We want to make every possibility a reality for our kids. Facing a long list of the things your child can't do makes that difficult for a parent. My job is to keep my child safe and teach her how to take care of herself.  I have to break her heart when she asks to play contact sports or requests a trampoline for Christmas. I have to explain to her why she has to sit out when her gym teacher decides to teach a gymnastic unit in school.

Last week I talked about teaching my child that her epilepsy makes her unique. Keeping her confident is not always easy in the face of all of the things her friends and peers can do, that she cannot.

My daughter can't climb mountains or skydive from planes, but she will find her place in this world, and she will be amazing. 

-Abby, Guest Blogger