My 21 year old son has epilepsy.
His seizures started right after Sept 11, 2001. They continue to this day.
He lives at home and basically lives the live of a hermit but that’s his choice - he refuses to be put in a home. He graduated in the top 10% of his class, needs a wheelchair if he is out & about for extended periods.
After his first siezure he was interviewed numerous times in private about whether my wife, I, or any other relative may have abused him.
This goes on every time a new medical team or social worker is involved.
Then the subtle attacks about being in an “intact family”, that’s right. Somehow it’s unusual to 90% of the social workers out there.
He has had four brain surgeries, and a fifth to plant a pacemaker like device in his vagal nerve located in his neck which they snaked up through his armpit. It helps but in case of a severe attack someone else has to activate it for him. He has up to twenty siezures a day, mostly mild but some can be quite severe (even with meds).
He has been on every anti - siezure medicine known to man, that and in every combination possible. They work, then they don’t, then another combo is tried. That’s why it is called a medical practice. Trial & error.
Though they can dice up (doctor’s words) his frontal lobe to prevent the siezures from travelling across the brain but he won’t have the same personalty he has now - think One Flew over the Cuckoo’s Nest, etc.
Everyone in the family, immediate & extended helps out - I have to be in the bathroom anytime he showers, I have to walk up and down the stairs anytime he goes up or down them.
Yet he has to live like the rest of us and he isn’t supervised 100% of the time 24/7 nor was he in any of the hospitals he has been in - it’s damned near impossible and from his point of view unwanted.
And yes I’m when my son eventually passes on (a lot of folks on long term anti-siezure medicine cocktails usually die from a sudden heart attack) we’ll face the same idiots Travolta and his family are facing now.
I say lay off the guy and his family.
Yes, yes. They have all the answers, but never peer through the glass darkly.
Don't let the bastards get you down.
Thank you for your post. My heart goes out to your son and your entire family. The intolerance and downright cruelty one sees on this thread and, all too often, elsewhere on FR these days, illustrates why so many people in the general public are repulsed by conservatives.
My older sister had seizures her whole life. Her earliest memories, she simply referred to them as “afraid spells.” They became worse at puberty. She would go though periods of near control while on ungodly amounts of medication. She has totaled 3 cars. Finally at 25, she had the “lesion” in her brain removed. The surgery successfully eliminated the seizures. BUT, she has personality disorders that have prohibited her from socializing well, or enabled her to hold down a job. Her disorders seem minor, but they are really quite debilitating. It has been a very long, hard road for our family. Doesn’t change one iota how much we love her, even though she can be very difficult to like.
I heard it speculated that the boy may have had Cushings disease that caused the seizures. Whatever, the Travoltas deserve to have this time mourn in peace. The autopsy will tell the story. Speculation is cruel and unjust.
My grandmother used to have petite mal seizures, following being run down by a hit and run driver. It was very scary for me, as a kid.
I agree with you and my sympathy for all your family is and has gone through. The doctor I work for has several patients with uncontrolled seizures, people seem to think medical science can solve everything, but when it comes to the brain that is far from the case.
My best regards to you and your family...
“I say lay off the guy and his family.”
I second that.
As a retired nurse, my heart goes out to your family as you all struggle with these issues. I appreciate them, especially on this thread with some remarks that do not reflect well on FReepers.
As a young woman, I had a friend who lived with her family, had a fairly severe seizure disorder, had to take meds that sometimes made her fairly sleepy, and had had extensive, expensive dental work due to tooth fractures during seizures. She was working at the bank where I worked, at the time, but she was getting set up for brain surgery in the next few months; my family moved out of town and I moved into university, and we lost touch. Amazing how some families live, the challenges they face.
If you don’t mind, I’m going to pray for all of you on a regular basis.
People are afraid of us. Seizures scare the pants off of people because of the total loss of control. Anything to do with the brain scares people because so little it known. Most people think you are mentally off which in fact is wrong, some of the most brilliant people the world has ever seen have been epileptics.
My heart goes out to the family of Jett Travolta and to others who are affected by seizure disorders. His, like mine is from birth but there are many others who have started having seizures for no discernible reasons or from severe head trauma.
Thank you for sharing your story.
God bless you and your family.
Have you looked into a ketogenic diet? I know of no one who has had firsthand experience with it but according to what I've read and heard, it can be very effective.