Caregiver: Kendra
Relationship to Loved One: Mother
Loved One with Epilepsy: JW
Relationship to Caregiver: Son
What is the official diagnosis of your loved one?
First was focal epilepsy, then changed to generalized epilepsy.
What is your definition of epilepsy?
When the brain is overloaded and misfires, causing confusion in the brain which in turn causes your body to (do) abnormal things.
When was your loved one diagnosed with epilepsy?
3 yrs old; he’s almost 7 now.
How did it change your life?
Our life became more stressful as his seizures increased. The medicine and/or seizures changed his behaviors and moods and our two youngest children would pick up on it and act out as well. My husband and I wouldn’t trust anyone to watch our son for fear they couldn’t handle it. We lived very paranoid lives.
What was your initial response of his/her first seizure?
Panic and fear!
What have been some of the BIGGEST challenges you face as a parent/husband/wife/etc.?
Not always agreeing on treatment, doctors, why he is acting a certain way, etc.
What are some of the DAILY challenges you face?
Right now, not many since he is seizure free. But still have to push him to drink water. On cooler days he acts funny (not sure why). Making sure when he’s under someone’s care that they know what to do if he has a seizure and what to look for.
What are some false thoughts about people with epilepsy?
I really have a hard time with people not understanding how serious even 1 seizure can be or that you can die from a seizure.
What is your biggest fear for your loved one?
That he will have a serious or deadly seizure.
Has your loved one had any seizure-related surgery? If so, what was it? Did it help? How did/does this affect you?
No surgery.
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.
1st medication made his seizures worse and more frequent. When we took it off, his seizures stopped, but of course they have to put him on something, so he is on a lower than average dose of Keppra and has had one simple partial seizure in the last year and half.
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?
No, I have not. We are trying to get off of meds. For us we feel the side effects are outweighing the rest.
What are some of the positive changes that have affected your life due to epilepsy, if any?
Brought our family closer. We are a team working together to raise awareness and help our son.
Do you have any encouraging words/hope for people recently diagnosed with epilepsy and/or their loved ones?
You are not alone. There are so many support groups and parents out there going through a similar experience. Best thing we did was research day and night and question everything the doctors wanted to do.
What’s one word you want the general public to think of when they hear the word “epilepsy?”
Fighter.
Is there anything else you want the general public to know about epilepsy?
That is doesn’t matter how many seizures you have or what kind; the risk of injury or death is real and very scary. A lot of people really don’t understand or comprehend this. It may seem that I focus on that part a lot and it’s not something I obsess about, but want people to realize.