When Friendship Becomes a Lifeline: Building a Seizure Emergency Kit and Finding Support
- saltysproutscollec
- 5 days ago
- 5 min read
Updated: 4 days ago
My Daughter's First Seizure Changed Everything
When my youngest daughter had her first seizure, I didn't recognize what was happening. She was only eleven months old, my baby, and I had no frame of reference for what I was witnessing.
At first, it looked like she was just staring into space. Her body went stiff, her lips twitched slightly, and I thought maybe she was holding her breath. We rushed to the hospital, shaken and bewildered. The local emergency room doctors diagnosed it as a febrile seizure, something they described as "common" and "nothing to worry about." They prepared our discharge papers. Then it happened again. Right there in the hospital room. The same vacant stare. The same panic rising in my chest. The same oxygen drop on the monitors.
Everything changed in that moment. We were immediately transferred to the children's hospital, and that's where our real journey with pediatric epilepsy began.
Learning About Epilepsy the Hard Way
Before this experience, I knew virtually nothing about epilepsy or seizure disorders. The only seizure I'd ever witnessed was my grandmother's, which was caused by brain cancer. This was completely different. This was my infant daughter. I was suddenly immersed in a world of pediatric neurologists, rescue medications, EEG testing, and sleepless nights filled with worst case scenarios. I went from complete ignorance to crash course expert because I had no other choice.
Nothing prepares you for the moment you realize you'll never look at your child the same way again. Every small twitch, every pause, every moment of stillness becomes a potential warning sign.
Finding Another Parent Who Truly Understands
A few months into our journey, I connected with another mother through our small Facebook epilepsy support community. I didn't realize how desperately I needed that connection until we started talking.
She spoke the unspoken language that only parents of children with seizure disorders understand. She knew the fear that comes with every unusual sound from the baby monitor, the way you hold your breath waiting to see if a movement is harmless or the start of something serious. She never dismissed my anxiety or grew tired of my endless questions. She had walked this path a month after me with her daughter. That friendship became my lifeline. When things got overwhelming, I could text her. When I needed to cry, she didn't tell me to stay positive or be strong. She simply said, "I know," and that was enough.
When your child has PCDH19 epilepsy or any seizure disorder, this kind of connection isn't just helpful. It's essential for survival.
Creating Our Seizure Emergency Bag: A Parent's Preparedness Guide
After several panicked trips to the emergency room, we decided we needed a better system. We created what we now call our Seizure Emergency Bag, a fully stocked kit that stays by our front door, ready to grab at a moment's notice.
It's not elaborate, but it's organized and comprehensive. Having this emergency preparedness kit lets me breathe a little easier in a situation where control is often an illusion.
Medical Essentials for Seizure Management
Critical Medications and Documents:
Rescue medication (diastat or prescribed emergency medication), clearly labeled with dosage instructions.
Extra doses of daily anti-seizure medications in a labeled travel pouch.
Printed seizure action plan with step-by-step instructions.
Complete medication list with dosages and timing.
Copies of insurance cards, medical ID cards, and emergency contact information.
Pediatric neurologist contact details and hospital preferences.
Comfort Items and Basic Necessities
Multiple water bottles and electrolyte replacement packets.
Non-perishable snacks (hospital vending machines are inadequate and expensive).
Change of clothes for both parent and child.
Baby wipes, hand sanitizer, and tissues.
Small comfort blanket or preferred bedding.
Diapers or pull-ups if needed.
Technology and Documentation Tools
Tracking and Communication:
Portable phone charger and charging cables.
Notepad and pen for documenting seizure activity, duration, and symptoms.
USB drive containing medical records, recent EEG results, and pre-filled hospital intake forms.
List of current medications with pharmacy information.
Recent doctor's visit summaries.
Emotional Support Items
The Things That Matter:
Your child's favorite stuffed animal or comfort toy.
Small family photo.
Stress ball or fidget tool for the waiting parent.
Lip balm, gum, or small personal comfort items.
Inspirational note or reminder of your strength.
Why Emergency Preparedness Brings Peace of Mind
Assembling this seizure emergency kit wasn't about giving in to fear or paranoia. It was about reclaiming a sense of peace in an unpredictable situation.
Every labeled pouch, every checklist, every backup plan represents a small way of taking back control when epilepsy constantly reminds us how little we actually have.
This isn't about being fearless. It's about being prepared enough to function when crisis strikes.
Building this kit with my epilepsy parent friend made the process even better. We shared ideas, compared checklists, and created something that declared: "We're ready for the next emergency. And this time, we'll handle it on our own terms."
The Essential Power of Parent Support Networks
That friend has become part of my emergency response plan. When a seizure happens, she's one of the first people I contact. Sometimes I don't even explain what happened. I just send a simple heart emoji and she understands completely.
This kind of friendship, born from shared fear and strengthened through mutual understanding of chaos, becomes the foundation that holds you together when everything else feels like it's crumbling.
If you're parenting a child with epilepsy, find your person. Find the one who understands the panic that lives in silence. The one who responds to texts at two in the morning. The one who never dismisses your concerns with "everything will be fine," because they know it's not always fine, but that you'll survive anyway.
In this world of pediatric seizure disorders, authentic connection is genuine medicine.
Advice for Parents Just Beginning This Journey
If you're new to this world, if your child just experienced their first seizure and your heart is still racing, I want you to know I see you.
You'll learn faster than you ever imagined possible. You'll discover reserves of strength you didn't know existed. And eventually, you'll be the experienced parent helping someone else prepare their first emergency kit.
Until then, just focus on the next immediate step. Prepare what you can. Ask for help without hesitation. And never forget that you're not alone in this journey.
Building Your Own Seizure Emergency Kit
Creating a comprehensive seizure emergency bag is one of the most important steps in epilepsy management and preparedness. Start with the essentials, then customize based on your child's specific needs and your family's situation.
Consider using clear, labeled pouches to organize medications separately from comfort items. These are my new favorite
Keep everything in a durable bag that's easy to grab quickly. Update medications before they expire, and review your action plan regularly with your neurologist.
Most importantly, don't wait for the next emergency to get organized. Preparedness reduces panic and can genuinely improve outcomes during a seizure emergency.
Here is what is inside ours:
My favorite thermometer: It’s quick, precise, and easy to use. Readings line up with oral temps and the build feels hospital grade. (Hospitals in my area use this)
My favorite syringes & oral syringe adapter plugs:
Find the entire list here: SHOP HERE
This post may contain affiliate links, which means I may receive a small commission, at no extra cost to you, if you make a purchase through a link.
