Caregiver: Samantha
Relationship to Loved One: Mother
Loved One with Epilepsy: Matt
Relationship to Caregiver: Son
What is the official diagnosis of your loved one?
The official diagnosis of my son is cortical dysphasia.
What is your definition of epilepsy?
NA
When was your loved one diagnosed with epilepsy?
Diagnosed at the age of 6. He was in kindergarten and it happened while waiting to go into the classroom.
How did it change your life?
Having a child with epilepsy makes you grateful for the healthy times in your life.
What was your initial response of his/her first seizure?
My first response was surreal. I couldn’t believe it was happening.
What have been some of the BIGGEST challenges you face as a parent/husband/wife/etc.?
The biggest challenge as a parent is learning to let go.
What are some of the DAILY challenges you face?
Daily challenge is to try to think positive, that today will be a good day for him.
What are some false thoughts about people with epilepsy?
False thoughts? I don’t have those experiences.
What is your biggest fear for your loved one?
My biggest fear for my son is that the seizures will worsen as time goes on. When he had his brain surgery to remove the lesion, he was seizure free for five years! We thought he was cured and all would be ok. We were completely devastated when they came back.
Has your loved one had any seizure-related surgery? If so, what was it? Did it help? How did/does this affect you?
He had brain surgery at the age of 7 to remove the lesion from his right frontal lobe. He is now 25.
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.
Medication has helped control the seizures at times, but he is currently having seizures. His seizures are 10 seconds long. A stiffening of left side. He holds on to things to help control himself from falling. He has a lot of seizures through the night as well.
I would like him to change doctors and be more involved in his medication. I would love for him to change Medicines. Currently he is on Lamictal and Keppra.
The hardest thing about epilepsy is finding the best medicine mix to stop the seizures. When your child is young, you have the control, and they live with you and you support them. However, once your child is 18, you no longer have that control, unless you keep them from going to college and pursuing self reliance. They graduate, get jobs (hopefully) and leave to go out on their own. When they do get that job, but still have seizures and want to try new medicines, it takes such a toll on their bodies. They need time off of work, and they take the chance of losing the job and losing health insurance, not to mention the high cost of the meds that a 20 something could certainly not afford, plus afford rent!
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?
NA
What are some of the positive changes that have affected your life due to epilepsy, if any?
My son has a very good disposition. He is a happy man and sets goals for himself. He graduated from college. (He) immediately went to a full time job after graduation working nights at a hotel. (He) saved enough money to go on a 4 month volunteer organization to Thailand. (He) volunteered 6 weeks and the rest of the time backpacked by himself, staying at hostels with all his meds with him. (He is) currently working full time in hospitality.
Do you have any encouraging words/hope for people recently diagnosed with epilepsy and/or their loved ones?
Encouraging words……stay strong! You can have a “normal” life, but be aware and be safe.
What’s one word you want the general public to think of when they hear the word “epilepsy?”
NA
Is there anything else you want the general public to know about epilepsy?
The most important thing for me in all this is that my son be happy. I think of this every day.