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

What to Expect During an EEG

As I've noted before, it took four years of seizures for our daughter to be diagnosed with Absence Epilepsy. Her first EEG was when she was two years old after a series of complex febrile seizures that resulted in a one-week hospitalization in a children's hospital. Our daughter has never been put through a 24-hour EEG thankfully, so I cannot speak from experience with that length of an EEG, but she has had several 1-hour EEGs. 

Our daughter has been sensitive and picky since birth. Unless her conditions are ideal, she will not sleep for us. She was never one of those babies who could fall asleep anywhere. She had to be rocked or nursed to sleep. Even at two and three years old, we were rocking her to sleep for naps and bedtime. It was exhausting. An EEG requires that the patient be asleep for part of the test so they can monitor brain activity during sleep. 

What is an EEG

EEG stands for Electroencephalogram. It is a diagnostic test that measures electrical activity in the brain. Since seizures are electrical disturbances in the brain, EEGs diagnose and monitor seizures and epilepsy. 

With an EEG, a neurologist can tell if seizures are occurring, if epilepsy is present, and (hopefully) what type of epilepsy. 

Our EEG Experiences

6-year old waking up from EEG

Our first few EEGs were difficult since Ollie was so young and so sensitive. The techs begin by gluing electrodes to her head. An EEG can have as few as four or as many as 250 electrodes. The tech measures Ollie's head and marks her head with a grease pencil for placement of the wires. Then a special glue is used to secure the electrodes. The electrodes hook to wires leading to the machines running the test. Then her head is wrapped with gauze to keep things in place.

During the EEG, they test several situations that could induce or trigger seizure activity. (They call these "activations".) The most common conditions are flashing or strobing lights, and hyperventilating. For our EEGs, they've always asked us to have Ollie wake up at 4 or 5 a.m. the morning of the test so she is sleep-deprived. Sleep deprivation can also be a trigger for abnormal brain activity. So imagine waking up your 2-year-old in the middle of the night and then asking her to tolerate electrodes glued to her head and then put her through all kinds of uncomfortable conditions. For the last part of the EEG, the patient falls asleep so the tech can run the EEG during sleep to check for brain activity during sleep. 

So we have a sleep-deprived, irritated, already bad sleeper of a two-year-old that we're supposed to get to take a nap with electrodes glued all over her head. Easily done, right?

When Ollie was hospitalized the first time, I had to stand and rock her to sleep in my arms with the wires from the EEG hanging all over the place. Then gently attempt to place her down on the bed once I was sure she was asleep for the remainder of the EEG. For us, the sleep portion is the most important because that is when our daughter tends to have her absence seizures. 

Now at seven years old and having gone through at least three EEGs every year, Ollie is an expert at this test. She knows exactly what they are going to do. During these EEGs are the only times she will willingly nap for me during the day! Her most recent EEG in December 2019, was the first EEG that has not shown any seizure activity since her diagnosis. Normal EEGs means that if her next few continue to come out normal, we will discuss weaning her off of her seizure medications. 

Her next EEG is coming up in May. We travel two and a half hours to Chicago to see her pediatric neurologist. We tend to make these trips to Chicago a fun day for our kids; in December we went to the Chicago Museum of Modern Art. We are thinking about the aquarium with this next trip. 

-Abby, Guest Blogger