Our daughter had her first seizure at four years of age. It was a febrile seizure and we were dismissed from the emergency room with assurances that it was unlikely to happen again. That prediction could not have been more wrong. Within the next year our family life was filled with more twists and turns than I have words to account for. It has been seven years since that first seizure. Not one of those years has been without seizures, secondary injuries, hospital stays, medication changes and more. Ultimately our daughter was diagnosed with Doose syndrome, a rare medication resistant form of epilepsy, that has challenged and changed our entire family. For those just starting on their journey or those struggling to find their normal, here are a few of the practical things we have learned about how to manage life with epilepsy.
Please note: Epilepsy is a spectrum disorder. Some epilepsies are easily managed with a single medication while others are uncontrolled with medication. This article mentions several accommodations (seizure monitoring watch, helmet, wheelchair) that are not required in the majority of cases. As always, please take what will help your family and leave the rest- no extra stress or anxieties needed. As special needs parents, we all have enough of those!
Seizure & Medical Management
Keep a detailed seizure log.
We have used both the Epilepsy Foundation app, My Seizure Diary, and the Mate App, which is a companion to the Embrace Seizure Watch. A detailed log is a valuable communication tool. A regular notebook can work, but we frequently screenshot the logs and email them to our neurologist. He prints them off and adds them to her chart which makes them an official edition to her medical record.
If possible make a video record of your child’s common seizure types.
Video records can be used to show your neurologist what they might not see in the clinic. They are also useful for working with school personnel who don’t have seizure experience and for training caregivers. You don’t need to record every seizure, a single video for each type of seizure is enough.
Ask about additional specialist support.
Kids with epilepsy often benefit from various therapies such as physical, occupational, speech, social skills, counseling, and more. A nutritionist can help make dietary adjustments to optimize both seizure control, growth, and offset medication effects. Epilepsy has a wide range of commonly found co-diagnosis and a variety of long term outcomes. In many instances, we have hesitated to ask for a certain support only to find that they were simply waiting for us to ask.
Plan ahead for EEGs.
For outpatient EEG (electroencephalogram) exams, your child may be asked to come to the visit tired. They will recommend sleep deprivation the night before. One thing we find works well in this case is to stay up at home the first part of the night and then head out to a 24 hour Walmart and get breakfast out so the drive to the clinic is very short the next day. You don’t want to keep your child up all night only for them to fall asleep on the way there! For younger children, ask if you can lay down with your child and bring a favorite night time blanket or stuffie to help them rest.
For inpatient video EEG exams, ask for Child Life and or social work to meet with you as soon as you arrive and provide projects, toys, and activities to stay busy while confined to a small space for an extended period of time. The television will be there when you need it, but don’t rely on it. Find out in advance what the parent requirements and flexibility are for supervision and meals. Plan ahead to have some breaks; don’t assume the hospital will provide this.
For all EEG exams, it is helpful to plan ahead for how your child will be kept calm and distracted. It can take up to an hour to properly attach all the leads for an inpatient exam. Again, Child Life is an invaluable resource.
Know your educational rights.
Children with epilepsy may be able to participate without modification in a mainstream classroom or they may require varying levels of academic and social support. At the very least, a 503 can help assure you that your child’s medical needs and safety are being taken seriously. Some children with epilepsy will also qualify for IEP services and other mid-level supports. Don’t wait for the school district to bring this up. Be your child’s advocate from day one.
Have a seizure action plan.
This extends to nursing care for seizure medications given at school and rescue medications. Some school districts won’t allow their nurses to give any rescue medications and will only call a parent or emergency medical services. Others will give certain medications but not others. Learn what your district policies are and have a written action plan with the school that everyone on your child’s team is familiar with.
Make a plan for missed school.
Academic accommodations can be written right into the education plans mentioned above. It is also helpful to plan ahead for parent employment; who can stay home, or take time off. Not all abnormal brain activity results in visible seizures. Seizure medications can be hard on sleep, concentration, and more. These factors may just mean your child needs more rest. They may need to stay home with mild illnesses or to stay home longer when other children would not. In our experience, letting rest happen when it is needed shortens recovery time and increases baseline function on good days.
Advocate for religious education and participation.
Epilepsy should not generally hinder participation in most religious activities and education. Do not be afraid to advocate for an environment and supports that allow your child to participate fully in the life of the church in all areas – from Mass to youth group.
Last year for Totus Tuus, my daughter desperately wanted to participate without Mom. We arranged for a dedicated volunteer aide and I stayed onsite but was not her direct helper. The aide was always available, and if anything more serious came up I was nearby. This arrangement wouldn’t have worked in year one, but is the fruit of many years of insisting on involvement for my daughter. Keep an open mind and focus on reasonable accommodations and supports. If you run into trouble, ask around to see if your diocese may have a disability advocate that can provide assistance. If not, try contacting the National Catholic Partnership on Disability for support.
Family and Social Support Structures
Educate your extended family and friends as needed while respecting your growing child’s privacy.
Seizure example videos might be very important for someone who is going to be caring for your child for a period of time. They are not, however, fodder for Thanksgiving dinner so Uncle Joe, who’s second cousin twice removed had seizures once can relive all the ways you are taking things out of proportion. Everyone can love your child without being privy to medical information and decisions regarding your family’s life with epilepsy.
Take advantage of respite.
Depending on the situation, life with epilepsy can be an around the clock job. It is a good idea to have one or two people who are fully looped in to your child’s needs and able to care for them while you do something with your spouse or other children…or just take an afternoon to nap! This is helping you to be a better parent and is not a sign of weakness.
My eight year old can identify and diagnose multiple seizure types better than most adults. He does this calmly and without much to-do. That doesn’t mean it isn’t affecting him. Kids need respite too, probably more often. Check with your local hospital or school to see if they have programs available for siblings of kids with special needs.
Encourage independence and autonomy.
While some children will outgrow their seizure disorder, many will not. Encourage your child to take responsibility for their disease management as they are able. For example, our daughter wears a helmet as protection from falls (this is not needed for most children with epilepsy). She also uses a wheelchair in some settings. Adults might assume that the wheelchair would be more restrictive, but we are comfortable (in some places) giving her a choice, as able, if she would like to wear the helmet or use the wheelchair.
Connect with other epilepsy families.
There are many ways to do this online and the Epilepsy Foundation offers many in person walks and events in a variety of locations. This type of support can give you encouragement, understanding and more practical tips than can fit in one article. Those a few years ahead of you on the journey will have easy answers to the questions keeping you up at night. In a few short years, you might find you are the one answering questions while not being entirely sure where you learned the answer!
I remember when our daughter was diagnosed, our pediatrician told us that she thinks seizures are the scariest thing that a parent can ever observe in their child. All this time later, I understand even more what she meant by that. This is hard. Even with the top level management, life with epilepsy is unpredictable at best.
Epilepsy will change the structure of your life and family, but that does not have to be a long list of negatives. You can advocate for your child to participate in community life in a way that is inclusive and fulfilling, even if that life looks different from how you hoped.
Please know of my prayers and encouragement for all who are just beginning on this road and those who are struggling to find their place. May Our Blessed Mother comfort, encourage and protect you as you nurture the child you have been gifted.
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.