A Day In The Life: Raising A Child With Epilepsy, by Heidi Indahl

We just go home?!”

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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?

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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.

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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.

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Diagnosis

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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?

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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.

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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.

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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.

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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.

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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.

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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.

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A Typical Day Five Years Later

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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.

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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.

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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.

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At times Lucie has attended school which made the morning more rushed. This year, however, she is homeschooling. After breakfast most days, she works on her workbooks next to me. (In fact, that’s what she is doing right now!) She is academically delayed but absolutely loves school and rarely resists working. I don’t worry about grade levels, just lots of practice with numbers and words in whatever subject she wants to work on. Her favorites are science and Latin.

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While she does work happily, like most kids she won’t pick up the areas she struggles with unless asked. I try to make sure we practice something for fine motor and executive function skills (following directions) most days, but we often incorporate that into other parts of the day. Life skills are a constant work in progress! When she is done with school work she usually spends time playing outside, especially swinging and biking. She also likes to help in the gardens and has her own haphazardly planted box.

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We live on a farm and have had to make some adjustments to keep Lucie as safe as possible. We added push button code locks to one of our outbuildings that houses more dangerous equipment and fenced a small area of the yard that we can easily see from the kitchen. Now that she is older she can open the gates, but thankfully elopement isn’t an issue we have. Bad decision making is harder to overcome, so we don’t let Lucie play outside unless someone is with her. Even her younger siblings can sometimes be heard telling her that something is not a good idea!

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After lunchtime, Lucie is starting to get tired although getting her to admit that is pretty much impossible! We have a couple hours of designated screen time in the afternoon to encourage her to keep her body still for a bit. Sometimes she will choose to rest by laying on her bed and listening to an audio book on her Amazon Dot. Days when her brain is especially overloaded or if she has had a lot of seizures, she won’t do much more than that. Mid afternoon, Lucie takes another round of medication.

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Lucie’s favorite game is the card game Dutch Blitz and she starts asking her dad for a game more or less as soon as he walks in the door, no matter what time that is! She is very routine driven and needs exact answers and specific follow through. Maybe and later are not words we use much! She is kind of a constant stream of talking and movement. By the time Dad is home, Mom and big siblings are starting to get a little personal space overwhelm and a fresh person is really helpful.

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Lucie also receives respite care about one weekend per month. We always plan for all the things we are going to work on, but in reality we often end up vegging out for a great deal of the time she is gone. Her energy level is our normal and we don’t realize just how much it requires until we step away. Lucie loves going to her bonus family and they always plan fun activities for her.

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Bedtime is thankfully a pretty quick routine for Lucie as one of her evening medications helps her fall asleep. She tires easily in direct proportion to the number of seizures she has been having. Bathing requires full direct supervision and often hands on support due to safety concerns. She takes her final round of medication of the day and puts on her seizure watch for overnight.

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Medical Care

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We are currently taking a break from speech, OT, and PT. That doesn’t mean we are free of regular contact, however! We keep in touch with her neurologist on at least a weekly basis, sometimes almost daily. In addition to her neurologist, Lucie sees her primary care provider every 2-3 months for growth checks. She also sees a physical medicine/rehab doctor annually. Her legs and hips are a long way from her brain and we keep a close eye on any extra support such as orthotics she might need there.

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Our main goal medically is to get Lucie’s seizures under control so we can work on building those other life skills and keep her as healthy as possible moving forward. The burden of so much medication on Lucie’s systems isn’t negligible, so she has regular blood and urine labs to monitor how she is doing.

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One of the nice things about COVID (yes, I said nice things!) is that our healthcare system has gotten much better about virtual appointments and messaging. We handle almost everything virtually now, which has saved me hours of driving… literally days. Our insurance also started covering 90 day supplies of medications which saves me a lot of time in pharmacy lines.

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We have not had a hospitalization in two years or an Emergency Room visit in almost as long. As we have done this longer, our providers have trusted us with a longer lead time and instructions for dosing emergency medications more than once to keep us out of the hospital.

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Thankfully, my husband and I tag team the logistical side of Lucie’s care as much as we do the practical. He handles most of the financial (insurance, disability, case management, etc) side and I handle most of the medical side. It is a lot easier for him to take phone calls and sit on hold while working at his desk than it is for me while supervising Lucie all day.

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We are blessed that our church community has embraced Lucie as one of their own and that helps us participate as much as possible in parish life. They welcome and encourage her hugs and help keep an eye on her at social events. A few weeks ago, I even saw another dad patiently taking “ballet lessons” from Lucie during an event!

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Her long term prognosis is not particularly clear at this point and we have made it our number one goal to have her at peace as best we can and find ways to include her in normal family life. Our normal might not look the same as it did five years ago, but our new normal is every bit as doable as that discharge nurse told me it would be.

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Takeaways for the Newly Diagnosed

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  • Find doctors that you can trust. Keep in touch with them and believe them when they say they trust you.
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  • Set realistic practical (life) and medical (health) goals and use that in making decisions about when to try new therapies and when to press pause.
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  • Take a break when you start to feel overwhelmed, before if possible.
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  • Support systems are crucial. They can come in the form of family, friends, church, medical, and more. Don’t stop until you have a support system in place.
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Most importantly, you can do this!

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Heidi is a country living Catholic mama from Southeast Minnesota.  She and her husband homeschool and raise seven living children on 8 acres of grass and mud puddles (plus a house). You can read her blog at www.workandplaydaybyday.com.

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