A Day In The Life: Raising A Child With Epilepsy, by Heidi Indahl
We just go home?!”
When our daughter was first diagnosed with epilepsy we spent a couple nights in the hospital for an overnight EEG. At discharge time, I looked at the nurse with incredulity. You expect me to just go home? You think I can handle this?
The thing is, they did think I could handle it. Five years later, it turns out they were right. We have had to figure out a lot as we go, and we keep in close contact with a variety of care providers who help us manage everything, but we can do it.
One thing I think would have been helpful in hindsight, however, was a bit of a deeper look into what life would look like moving forward. In case you are a new parent to epilepsy or struggling with the day to day, perhaps you will find this post helpful.
Of course, epilepsy is (like most special needs) a disability which varies greatly from person to person. Some children are able to live lives similar to their typically developing peers with good seizure control on minimal medications. Some children are never hospitalized for their epilepsy. Others have occasional seizures with or without other health conditions. Still others have severe epilepsies that affect many areas of their quality of life. Where does my daughter fall in that?
Lucie has something called Doose Syndrome, also known as myoclonic astatic epilepsy. She has three main types of seizures, tonic clonic, myoclonic, and drop seizures. She also occasionally has atonic seizures. Her seizures are generalized, meaning they affect her entire brain. Lucie’s epilepsy has led to a variety of other conditions such as motor difficulties, speech difficulties, learning disabilities, processing disorders, and ADHD. She was four at her initial diagnosis.
This is important to know, because the life I am going to describe falls on the more severe end of the epilepsy spectrum both in daily impacts and in management. Not all epilepsy looks like this and I don’t want anyone to panic that their child’s first seizure or initial diagnosis is going to lead to what we deal with.
After that first discharge from the hospital, we went home on a single medication taken twice daily. Lucie went 9 months seizure free with no change to her daily routine or cognitive ability. During this time, managing epilepsy was exactly like life without epilepsy with a couple of alarms to remind us to give her medication at the same time and we carried an emergency dose of diazepam, which we never needed to use.
Then she started having seizures again- more frequently than before and no medication change seemed to help. In our second year, we had a broken bone, several sets of stitches, and at least one concussion. We started to see side effects, including behavioral, cognitive, and motor, from all the medications she was taking. We spent a lot of time in the clinic and Emergency Department trying to stabilize her from sometimes dozens of seizures in one day and seeing several therapists to help her move better.
All of a sudden what was not life altering became life altering to the point of all consuming. At one point we went six months without attending Mass as a family because someone had to stay home with Lucie.
Several hospitalizations, a switch to the ketogenic diet, and we found a moderate level of stability even though complete control remained elusive. Lucie is now off the ketogenic diet (although we have been talking about returning) and continues to have frequent seizures.
A Typical Day Five Years Later
Sleep can be a challenge for Lucie with so much brain activity and interference from medications. Most nights she is up at least once or twice. She wears an Embrace seizure watch to alert us to night time seizures, which she has 3-4 times per week. In rest mode, the watch sometimes sends us a false alert if she wakes up and starts playing. To be honest, this is a bonus for us because executive function skills are low and if we don’t hear her she might make any number of dangerous or just plain bad decisions about what to do.
As soon as she wakes up in the morning, she brings her watch to the charger and takes her first round of medications for the day. If she has had a seizure overnight she may sleep as late as 9:00, especially if she required rescue medications. Otherwise she wakes up anywhere between 5:30-7:30.
Lucie can dress and feed herself, but she needs more help with these jobs than a typical 9 year old. As much to just keep her moving as anything, those of you with executive function challenged kiddos will understand! Due to the severity of her seizures, Lucie wears a helmet to protect her head from sudden falls so part of getting dressed is making sure she has it on and fastened correctly.
At times Lucie has attended school which made the morning more rushed. This year, however, she is homeschool