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When our daughter was diagnosed with a rare chromosome disorder, it came as a complete surprise. Doctors didn’t know back then, or at least it wasn’t mentioned to us, that epilepsy is associated with her chromosome deletion. So, when she had her first seizure at the age of three, we were blindsided.
The majority of Avery’s seizures happened at night and many were status epilepticus seizures. These are seizures that last for 30 minutes or longer and often require medical intervention to make them stop. It took about a year, but our neurologist finally figured out the best combination of anti-seizure meds that kept her seizures pretty much under control.
I recently joined Kathy Buckworth on her popular podcast, Go-To Grandma to talk about how grandparents can support and help a grandchild with epilepsy. Have a listen to episode 118 and share with other families who live with epilepsy. And yes I said “families.” An individual family member may have seizures, but epilepsy affects the whole family.
In the years since Avery was diagnosed, more people are talking about epilepsy and seizures. Social media influencers who advocate for epilepsy awareness are helping to spread more accurate information about epilepsy. But, as with most “scary” diseases the stigma remains. So talking about it whenever and wherever we can, helps dispel myths and make epilepsy less taboo.
A quick few facts:
💜 Epilepsy is not contagious. You can’t “catch” it from someone who has epilepsy. I know that might sound ridiculous, but some people believe that. A friend of my son’s refused to come and play at our house because he didn’t want to catch epilepsy from our daughter. So, ya.
💜 Some forms of epilepsy are rare, but epilepsy itself affects one in every 100 people worldwide. Epilepsy is more common than autism, Parkinson’s, MS, and cerebral palsy combined.
💜 Never put something in the mouth of someone having a seizure to prevent them from swallowing their tongue. It’s impossible to swallow your tongue. I challenge you to try. Instead, gently turn the person on their side to help keep their airway clear and just keep them safe and as comfortable as possible.
💜 Not all seizures look the same. There are many types of seizures, from the well-known convulsive seizures to subtle staring spells or sudden muscle jerks. Avery’s has had combinations of the three over the years.
💜 Epilepsy affects people of all ages. It’s not just a childhood condition, and it can develop in adulthood.
💜 There is no one-size-fits-all treatment for epilepsy. Treatment plans are highly individualized, and what works for one person may not work for another. So, it’s essential to learn what approach is best for their specific family member and learn everything they need to know about that plan.
💜 Friends, extended family and especially Grandparents, can support parents by being trained how to implement the family’s seizure management plan.
Seizure Care Strategies For Caregivers
It took me years before I was comfortable leaving my daughter with anyone, let alone allow her to sleep over. I finally relented because my family is so invested in learning everything they can about keeping my daughter safe. Plus, it would be really nice to be able to go out for dinner with my husband, or even away for the weekend, and not have to worry (much). I know my family is fully capable. Honestly, they’re probably more attentive than I am. So all hands on deck and away we go!
💜 Encourage caregivers to ask as many questions as they need to feel prepared and confident.
💜 It’s important to be able to recognize the different types of seizures. They don’t all look the same. And not all seizures are the “big ones,” the grand mals, which are now called tonic colonics. Those are easy to spot. Absence seizures however, are trickier to see because they’re often quick and can be mistaken for a staring spell. Explain what to look for and share any videos you might have of what your child’s seizures tend to look like.
💜 Stress the importance of meds being taken on time and correctly. Phone alarms are very helpful.
💜 Learn basic first aid for health emergencies, like choking, but for seizures too. You can take a course or book somebody to come do a refresher for a group of you.
💜 Create a list of triggers to avoid that may induce seizures. They’re not the same for everyone. Some might be flashing lights, certain foods, stress, being overtired or dehydrated.
💜 Be familiar with emergency rescue medications, if prescribed, and know how to administer them.
💜 During a seizure, stay calm, remove any harmful objects nearby, help them onto their side and provide a soft support under the head. Do not restrain, just keep them comfortable. And start timing the duration of the seizure.
💜 If the seizure lasts more than five minutes, or whatever the individual’s seizure plan indicates, or if a second seizure follows the first without full recovery in between, call 911. It can feel overwhelming, but when in doubt, call 911. You will never get in trouble for calling emergency services.
💜 After the seizure, offer reassurance. And let them rest. They’ll probably be really tired. And definitely call the parents to let them know details of the seizure, like its duration, and any other observations.
💜 Last but not least, create a Seizure Action Plan. This will include all of the above, plus emergency contacts, doctor’s info, and specific details about the person with epilepsy (weight, age, seizure type and history, etc.).
Get a free customizable Seizure Action Plan template HERE. Make a copy and edit to suit your needs.
Remember, though there are extra responsibilities involved when caring for a child who has seizures, you can absolutely care for a family member who has epilepsy. Spending time together can be low stress, high fun, as long as you’re prepared.
How you can support people with epilepsy
My grandma and papa love it when I have sleepovers at their house. My grandma takes me to the park. And I swim in their pool. They always give me my 7 o-clocks (seizure meds) at the right time. I sleep with my grandma so she’s close to me and my papa sleeps in the room downstairs. Which was my mom’s room when she was a teenager.
