Coping With An Epilepsy Diagnosis

Although we suspected it for a while, receiving the official epilepsy diagnoses for our 6-year-old daughter was a shock. The moment the doctor confirms the diagnosis, your mind begins a marathon going through every possible scenario, outcome, and question you could have. In those first few moments, it's challenging to consider the first and next steps when you're already thinking about the worst-case scenario for your child. This is especially true if you're an anxious worrier as I am.

My husband has a strong family history of epilepsy. His mother, his sister on one side, and his aunt, on the other side, all have forms of epilepsy. So when our daughter spent four years suffering from complex febrile seizures, we suspected epilepsy was involved. It took four years for a pediatric neurologist to take steps to perform an EEG finally, despite none of her seizures occurring outside of a fever. For four years, we held on to hope that perhaps they were just febrile seizures, knowing she had all three of the significant risk factors for epilepsy.

As prepared as we were, finding out definitively that she had epilepsy removed any of that hope. With the official diagnosis came medications, side effects, seizure action plans, and rules about what she could and could not do. It was overwhelming. As parents, we had to cope all while helping our daughter to understand and to cope with something going on in her brain.

Getting a Therapist Involved

We took our daughter to see a therapist. We needed help teaching her to cope with the possibility of having epilepsy for the rest of her life. We still don't know with certainty if she will be able to outgrow her childhood absence epilepsy. While it's possible, there is no certainty.

The therapist sat our child down in front of a whiteboard and drew pictures of the brain. She explained neurochemicals to a 6-year-old in a way that we would not have been able to. She brought out a plastic model of a brain and allowed our daughter to take it apart and put it back together again. This therapist explained to our daughter that all people have differences, and despite those differences, medical or otherwise, everyone is unique and special. Epilepsy was part of what makes our daughter unique and special. In several therapy sessions, our daughter was empowered by what made her unique, and we had tools to use when asked questions about her "apple-epsy."

If you're struggling like we were with the diagnosis for you or your child, a counselor or therapist is a resource that you can tap in to and give yourself and your child the tools in their toolbox to cope with a frightening and confusing diagnosis.

Sometimes as parents, we don't have all the answers, and we are not able to best explain things to our children when we are scared and confused ourselves. Therapy has been an invaluable tool for our entire family, and it could be for yours too.

-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

Only a small seizure caught

Weslee's at-home EEG finished this morning, and the leads etc off by 11:00.  I sure hate getting the glue off of his head!  Especially since his skin is so thin at the scar site. The name of the game is: gentle.

As far as seizures, Weslee had only one of his new "slam almost-seizures" - some new form of simple partials.  He has been having "almost seizures" for a few years - It feels to him that his brain is going to go into a tonic clonic seizure but didn't.  Two weeks ago, these new "slam"s added an intense staggering feeling to the beginning of them. We have no clue what these exactly are, or if they are even seizures, but we hope to find out definitively once the EEG tape/data has been read.

Trying to provoke a seizure

Day 2 of the at-home EEG.

Here's a pic of Weslee watching the "Incredibles 2".  It almost always brings on a tonic clonic seizure within 24-48 hours.

By the way, for information on movies that may provoke seizures or other health problems, go to https://moviehealthcommunity.tumblr.com/.  I don't like how the website shows up on my laptop, but it does ok on my tablet.

At Home EEG

While Weslee hasn't had a tonic clonic seizure since his May 1 2019 surgery, his little seizures are coming back slowly.  This at-home EEG was scheduled to see if we can figure out where these little ones are coming from, or if they will show up at all!

Almost all of Weslee's EEGs were done in the EMU ward in hospitals.  This is only the second done at home.  Still, we knew what to expect.  Video/audio camera recording everything.  EEG leads glued on (nasty stinky smelly glue) then the head is wrapped. At least he can walk around a little because the "pony tail" is battery powered and in a fanny pack.

We pulled out the couch into a bed and surrounded him with his movie binders, books, tablet and phone so he wouldn't need to go upstairs for anything.

And the video camera stays in the corner of the living room so he has privacy in the bathroom.

If you've been diagnosed with epilepsy, then you too know what it's like to be attached to an EEG pony tail!

After Chelsea finished applying the leads and wrapping him up, she did breathing and flashing light activations.  Nothing.

Another Side Effect from Hospitalization

Not for weak stomachs!

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As I've written about, Weslee went into the hospital on May 1 for a SEEG procedure, which went very badly. Brain bleeding, shunt placement, and lots of various therapies needed.

A few weeks ago, after Weslee got a buzz hair-cut, I noticed what I thought at first was dandruff but turned out to be crust from dried brain fluid.  It was leaking from his 2013 surgery scar, NOT from the 2019 scars.  Weird, I know.  I took him back to his neurosurgeon, where they put in a stitch and put him on antibiotics. It healed well. Or so I thought.

Today I took him for another haircut.  Found more crusty stuff.  Back to the neurosurgeon.  This time it was discovered that it was just oozing so instead of a stitch, we got a little pot of antibiotic cream and another around of antibiotic pills.

Unfortunately, he is scheduled for an at-home 72-hour EEG test starting tomorrow so he will only get the cream tonight and tomorrow, then we wait to apply more until after the EEG.

Here's picture I took after the first application of cream.

(The waves have been there since his 2013 surgery. No one knows exactly what they are, but they think it's just edema - fluid that has collected. Kinda cool but makes shaving his head difficult.)

The neurosurgeon thinks these leaks are from pressure building up, but not from his brain bleeds. That maybe the skin from the 2013 scar was weak / thin anyway, and the haircuts are cutting into it (not likely - I watch like a hawk). Or maybe he's scratching it without realizing it. Or maybe the extra fluid is looking for another way out besides the shunt. No clue.  Hoping this won't continue.