Caregiver: Leslie
Relationship to Loved One: Mother
Loved Ones with Epilepsy: Sara and Jamie
Relationship to Caregiver: Daughters
What is the official diagnosis of your loved one?
Epilepsy.
What is your definition of epilepsy?
Misfiring in the brain, resulting in seizures.
When was your loved one diagnosed with epilepsy?
Youngest daughter at age 9 months; middle daughter at age 8.
How did it change your life?
Always on “seizure alert”. Always waiting for the next one to appear. Created major anxiety for me.
What was your initial response of his/her first seizure?
I thought she was choking on something. Rushed her to the ER.
What have been some of the BIGGEST challenges you face as a parent/husband/wife/etc.?
Feeling so helpless while watching each seizure……..not a dang thing you can do to make it go away…
What are some of the DAILY challenges you face?
Dreading a call from daycare providers and school telling me they had a seizure.
What are some false thoughts about people with epilepsy?
They can’t hear you while seizing. Middle daughter told us exactly how we handled her first grand mal seizure.
What is your biggest fear for your loved one?
Having a seizure in her sleep…and losing her life from it.
Has your loved one had any seizure-related surgery? If so, what was it? Did it help? How did/does this affect you?
No surgeries.
Has medication ever controlled the seizure(s) of your loved one – i.e. sometimes medication stops them; sometimes it doesn’t work at all; sometimes it creates a different kind of seizure.
Only the youngest is on meds for them. She has tried 2 different meds. They both have Diastat for seizures lasting longer than 5 min.
Have you seen/heard/personally witnessed any new form(s) of seizure meds? If so, what are they? Do you consent if your loved one is willing to try one or more of these meds?
Have not. They are too young at this point.
What are some of the positive changes that have affected your life due to epilepsy, if any?
Learned to not sweat the small stuff. Learned that we really have NO control over what happens. Schedules are totally over rated—–just go with the flow because cannot predict when seizures will change what we have planned.
Do you have any encouraging words/hope for people recently diagnosed with epilepsy and/or their loved ones?
There are a lot of different meds and support groups.
What’s one word you want the general public to think of when they hear the word “epilepsy?”
Survivors!
Is there anything else you want the general public to know about epilepsy?
NA