#EQUIPMENT

Creating the Ultimate Seizure Readiness Kit

Wendy Fry
Wendy Fry is from Pennsylvania, where she lives with her husband and almost 3-year-old daughter, who was diagnosed with Dravet syndrome. Dravet has not stopped her daughter—according to Wendy, she’s “spunky, funny, and full of personality.”

As parents, we try to plan for everything. But when you’re a parent of a child with epilepsy, planning is that much more important. Seizures bring a level of uncertainty those outside of our community will never know—and in most cases, we parents are the first responders. As unpredictable as our lives can be, there are things we can do to help “control the uncontrollable.” For our family, one of those things was creating our Seizure Readiness Kit.

“Seizures bring a level of uncertainty those outside of our community will never know—and in most cases, we’re the first responders.”

My daughter, who is almost 3, started having seizures at 8 months old. When she first began seizing, we were often unexpectedly rushed to the ER by ambulance. The best comparison I can make to describe this time is the anxiety and anticipation of when you’re pregnant and waiting to go into labor. However, in this case the excitement of meeting your child for the first time was replaced with the fear that we’d lose our baby. Facing a traumatic experience like this, and doing so with only our diaper bag in hand, we were unprepared in every sense.

Before epilepsy entered our lives, I had intentions of being a very hands-off parent. My daughter slept in her nursery with only an audio monitor. Germs were good. Naps were optional when convenient and only as needed. After her first seizure, I really had to recalibrate every detail of our lives to ensure she was safe. That was when I put together our first Seizure Readiness Kit. It’s essentially a “go bag” containing everything we may need if my daughter experiences a seizure—or if we have to be away from home for an unexpected period of time. In our kit, you’ll find everything from her usual medications and a change of clothes to a seizure action plan and rescue meds, among other items. Your kit may be different depending on what form of epilepsy your child has. That said, it’s important to talk to your child’s doctor to determine what items are best based on their needs.

IN HER BAG

The items below are examples only. Because every child and every form of epilepsy is different, talk to your child’s doctor to determine what is best based on your child’s unique needs.

WE BRING THIS... BECAUSE IT...

All current medications (at least 1 full day)

Helps keep medications on schedule in the event you are not able to get home when planned

Thermometer 

Tells you if your child’s temperature is too high, potentially triggering a seizure

Sunglasses

Helps reduce light-triggered seizures

Fever-reducing medication, both oral and rectal

Lowers temperature to potentially avoid a seizure

Syringes

Administers medication, if needed

Seizure action plan

Helps others know what to do when a seizure happens and how to address special medical needs in the event of an emergency

Seizure rescue medication

Helps stop seizures

Finger pulse oximeter

Measures oxygen levels in the blood during a seizure

Food/snacks

Provides flexibility to feed your child if away from home for an unexpected period of time (particularly important for children following a medical diet)

Blanket

Provides a clean surface for your child during a seizure and/or privacy for rectal administration of medication

Comforting item

Provides comfort in the event of an unexpected emergency or hospitalization

Set of clothes

Provides a fresh outfit if soiled during a seizure or away from home for an unexpected period of time

CPR reference card

Gives you a quick guide for resuscitating your child

Having these items on hand at all times not only prepares our family for the unexpected, it helps everyone who has a hand in our daughter’s care. Our Seizure Readiness Kit and the free training provided by our local chapter of the Epilepsy Foundation are the perfect combination to help effectively manage the transition of care from one person to another throughout the week. This allows our many helpers (teachers, nurses, and family members) to have comfort and control so that they can focus on what’s important: our daughter. 

Having a Seizure Readiness Kit with a set plan and tools has taken some of the guesswork out of what can be a highly stressful situation. We’ve had to use these items on many occasions. For example, we’ve spent many days in the ER and were very thankful to have the bag with us. And then there have been times when the list of medications in the seizure action plan has been useful during scheduled doctor’s appointments. The Seizure Readiness Kit comes with us everywhere we go. Everyone knows that the red bag is my daughter’s bag. And being prepared and organized has given us a sense of control while on this unpredictable journey with epilepsy.

“Having a Seizure Readiness Kit with a set plan and tools…has given us a sense of control while on this unpredictable journey with epilepsy.”

As important as it is to be prepared, it’s also important be flexible. Situations rarely unfold as we expect. Knowing that, having a plan allows us to let go a little, go with the flow—and to not let fear take over. We strive to look for the silver linings when life presents us with challenges, and push forward to give her the best experiences possible. And with a little planning, we’re ready.

The views and opinions expressed in articles on this site are those of their respective authors and do not necessarily reflect the views of Greenwich Biosciences or any of its affiliates. The authors of these articles have experience in the topics they are writing about. Although the advice, tips, ideas, approaches, or resources mentioned in these articles worked for their respective authors, they are not necessarily endorsed by Greenwich Biosciences and may not be appropriate for you. Talk to your/your child’s doctor before making changes to any treatment plan.