Parent of a 19 yr. old with epilepsy

[execwife2002]

Hello,
My son has had epilepsy for the past 7 years. Up until this past October his seizures were all nocturnal. Since switching to a new Dr. whom we love, there has been a lot of aggressive med changes along with some day seizures (break through seizures they called them ). The Dr. was able to switch the meds around until we found the right combination that works. So far for the past 2 1/2 months my son has been seizure free. He is praying (as we are too) that he is able to stay seizure free for the next 3 1/2 months. He will then be able to drive.He knows that he has no control over the seizures from happening. He is a freshman in college this year at the Community College and lives at home. The side effects to the meds have been very challenging as they have hinder his ability to process his school work weight gain etc. But the side effects out weigh the fact that he's been seizure free. He's on Topamax, Lyrica, and Depakote. He recently cut out caffeine, and beer (which he didn't drink much of it to begin with). I do notice that when he gets a cold, or sick he has a seizure. He has no idea when a seizure is going to happen. His close friends all know and so does his school/teachers. Depression has played a part in this as well. He gets very upset/frustrated/angry due to the fact that he has to rely on others for transportation. We of course will take him anywhere...but you know how it is when a 19 yr. old doesn't want to be dropped off by their parents.
Anyone else out there dealing with something similar to this situation??

[POSITIVEPERSON]

Hi : Welcome to the board!!! Glad to hear your son is seizure free !!!!! I have had epilpesy
since I am 11 yrs old I am now going on 52 yrs old in NOV. I was brought up that epilepsy wasn't an excuse and life goes on. I never wanted to drive so I guess thats a big difference in our needs. All my friends knew I had epilepsy and it didn't matter to them or anyone I worked for.

Is he taking a multi vitmain,calcium magnesium , or vit c and b complex? The anti-epileptic drugs
deplete that in our bodies. Will help fight the colds.

Wishing your son a seizure free happy life!!!!!!!!!!

Riva

[execwife2002]

Yes, he does take magnesium every night. I am trying to talk him into taking a multi vitamin as well. He hates taking any more pills then he already does. He's had every test in the book. This summer he went to the Henry Ford hospital in Detroit for a MEG. They too found nothing wrong with him. Dr. wants us to go again because he says it can be a hit or miss thing. So we plan to go as often as needed. Any other suggestions for vitamins etc.?
Marian

[brain]

Marian

Consult with your neurologist or Epileptologist
first before allowing him to have any
vitamins or herbal treatments if he's
on anti-epileptic drug or anti-epileptic drugs - as some of such will
hinder the effectiveness of the meds!!

Many people are not aware of this and
many don't even inform the Doctor; but
I'm thrilled to hear he's having seizure-free
breakthroughs! Congrats!

Best wishes and glad to have you here!

[Bernard]

Hi Marian, welcome to the forum.

Lindy posted some good info about vitamins for epilepsy.

Best wishes for your son and his seizure control. It's been a long and twisting road for Stacy (my wife) and we still aren't at the end of her journey.

[1096]

hi,

im 19 with primary generalized epilepsy. i have every seizure you can think of!
the drop attacks are really the worst i find... 1 because with a grand mal, while it's traumatic you are unconscious for the painful falls/sometimes not painful at all. drop attacks are so quick every time i get them it ends in painful bruises and fractures and burns and split lips.

i can defnitely relate to the depression your son might be going through. & transportation is a problem, mum (single), is always working see... so she doesnt really have time to take me places... so he's lucky your really keen about that.

i bought a bike! which even is a little lame sometimes... but it's a pretty trendy one. hmmm, yeah dropped off by the parents is pretty annoying when all ur friends have their own cars/drivers licenses. and the friends get annoyed. i mean you can't really blame them, fuel prices are so high!

anyway, so im on epilim... 1000mg now, started 800mg but still had drop attack things.

my neurologist says 6months seizure free on epilim and i can go for my license, that's still shithouse you know? i went 3 months then had to start over + up my dosage. now i'm so sleepy i feel like why should i bother. and the bus is just an inconvenience, as is the taxi's expense.

keep your son motivated about doing things and not being scared (clubbing, cinemas etc) but don't baffle him with "i understand" speeches. just listen to him when/if he talks about it. don't try and be empathetic because all the people who show empathy that don't have epilepsy, don't understand and trust me, it's just annoying when they try and swap shoes with you but they get the size/colour/shape/style all wrong! it just leads to frustration, maybe loneliness because you have to force appreciation. like a shit gift on your birthday without the "at least i got something" to justify it. so it's empathy, just don't go there.

sympathy is good but not too much. feeling sorry for myself always encourages depressive states. or brings them on. but don't be completely mute >>> a little sympathy feels good. and don't make out your not interested at all. GLAD you got a doctor you like... personally i find good doctors hard to come by.

anyway so i sometimes drink coffee and can have 2 standard drinks with only slight petit mal coming on. vocal ones. anyway long story

basically the above advice is from ur usual 19 year old guy >> me! so take what you can from it. ask me questions because i certainly feel like there's more i can give here.

gl with thigns.

oh and don't let on like your terribly worried all the time, my mum does it, and you know it makes me feel down about it because i don't want to be another stress/problem for her. you know?

[Bernard]

Nice post 1096.

epilim... 1000mg now...now i'm so sleepy i feel like why should i bother.

Stacy was a zombie on epilim/depakote too. The "drowsy all the time" side effect was worse than having seizures for her.

[RobinN]

Hi, I have a 15 yr old, and I can relate

[Birdbomb]

1096

[execwife2002]

So, as I've been talking with all of you my 19 yr. old son had been seizure free for 2 1/2 months. This was the longest he's gone in a long time. Last night after dinner he was tired and went to rest on the couch and fell asleep. Minutes later he went into a seizure. After it was over he did something I never paid attention to. He wiped his nose with his left hand. I've read articles on the hand that wipes relates to the side of the brain the seizures are coming from. Any one know anything about that? My son was upset he told me this "sucks". I've put a call into the dr. to see if he wants to change anything med. wise. Since we recently (2 1/2 mo.) took him off of caffeine, aspartame, splenda, he takes magnesium at night does this seizure mean that by eliminating all of that didn't work or he needs more time for his body to accept it 100%?
Marian

[Bernard]

He wiped his nose with his left hand. I've read articles on the hand that wipes relates to the side of the brain the seizures are coming from. Any one know anything about that?

Nose wiping identifies origin of epilepsy

Since we recently (2 1/2 mo.) took him off of caffeine, aspartame, splenda, he takes magnesium at night does this seizure mean that by eliminating all of that didn't work or he needs more time for his body to accept it 100%?

It means it wasn't a 100% solution. I'm sure it helps keep his seizure threshold higher than it would be if he were ingesting all those things.

[1096]

what picture did birdbomb post, i can't see it. curious.

[Bernard]

It's a guy sitting in a chair pointing his finger to the camera with a caption that says, "Damn fine post, Chief!".