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Help, I'm losing hope for my 19 year old son
Thu, 03/12/2009 - 18:32I am the Mom of a 19 year old son that was diagnosed with primary generalized epilepsy 2 years ago after his first tonic-clonic seizure and it has been a bumpy road we've traveled ever since.
He was put on lamictal and it took about 7 months to get to a place that controlled his seizures. That lasted about 6 months and then it got worse. His Dr. took the lamictal up to 700 mg and he was still having an occasional seizure (always in the mornings) so he added keppra. The first few weeks of being on Lamictal and Keppra, was the angriest I've ever seen him. Fortunately that side effect went away. He now takes 400mg lamictal and 4000 mg Keppra. He went away to college this last fall and the first semester he did well, only having 2 seizures because of missed meds-but as time has gone by he's started having severe anxiety and is becoming more and more depressed.
His main triggers are sleep deprivation (he's always had trouble sleeping and now it's even worse) and stress. He's had a couple of bad seizures alone in his dorm room-the last one left him with rug burns on his face, arm and feet and a scratched cornea.
He doesn't take very good care of himself-he eats sporadically, rarely exercises (he used to play lacrosse and was quite an athlete) and his sleep patterns have gone from bad to worse. He also likes to drink on weekends, and now has discovered that smoking pot helps him relax. He says he doesn't feel normal and is always stressed out and feels he doesn't have any friends.
His Dr. just put him on Lexapro to help with the anxiety-so I pray that it will help him feel more like his old self again. My heart is breaking and the stress this is putting on our family has been overwhelming at times. My goal and focus right now is to help him through this-luckily he's only a little over an hour away so I can go get him when he needs me.
If any of you have any ideas, advice etc., that would help him I would really appreciate it! I so want him to be able to do the things he would like to do-but it seems that the things he loves doing the most (art, lacrosse)are the things he's left behind because he says they stress him out the most.
I'm losing the hope I had that he could have a "normal" life and find happiness along the way, now I just pray thay he'll survive.
Comments
Help for your son
Submitted by Bubby_5aad129dced7b on Sat, 2018-03-17 - 09:06
Re: Help, I'm losing hope for my 19 year old son
Submitted by cvargas on Sun, 2009-05-17 - 22:17
family of the Dylans,
I may not help too much cuz Im the actual person with Epilepsy but Im 37 now and I was 13 when diagnosed my parents at the time were very strong I did not know they were terrified at what was happening my Mom would always tell me to do what I put heart to now I know now that she and my father were lost and had no idea what on earth to do but they didnt want me to know they were and are my wall of steel
all the side effects, all the mood changes, and dont forget all the seizures (no its not funny) its just true I changed drs a lot if they didnt answer the questions that I needed to be answered if I needed to get a blood work done and they thought it was not nessisary I changed drs cuz quite frankly they dont know how I feel ......that may be something to think about I dont know
right now my doc will listen to me if I feel "druged" he gets blood work and lowers my dosage and right away asks my family if Im acting out the side effects
its something to think about Im not saying to do it
remember ....Never give up!!!!
`Christina Vargas
family of the Dylans,
I may not help too much cuz Im the actual person with Epilepsy but Im 37 now and I was 13 when diagnosed my parents at the time were very strong I did not know they were terrified at what was happening my Mom would always tell me to do what I put heart to now I know now that she and my father were lost and had no idea what on earth to do but they didnt want me to know they were and are my wall of steel
all the side effects, all the mood changes, and dont forget all the seizures (no its not funny) its just true I changed drs a lot if they didnt answer the questions that I needed to be answered if I needed to get a blood work done and they thought it was not nessisary I changed drs cuz quite frankly they dont know how I feel ......that may be something to think about I dont know
right now my doc will listen to me if I feel "druged" he gets blood work and lowers my dosage and right away asks my family if Im acting out the side effects
its something to think about Im not saying to do it
remember ....Never give up!!!!
`Christina Vargas
Re: Help, I'm losing hope for my 19 year old son
Submitted by joanne514 on Sun, 2009-05-17 - 21:18
I understand your feeling of helplessness. I have a 20 yr old son with possibly JME or primary generalized. We have a had a bad year. Since June 2008 he has had 4 seizures. the latest being 2 days ago. He is on 500mg of Lamictal. I'm not sure the Lamictal is the right drug but he is able to do well in college as he doesn't seem to have brain fogs.
I'm scare what is going to happen when we see the neuro next month because I don't want my son to deal wth unmanageable side effects.
I understand your feeling of helplessness. I have a 20 yr old son with possibly JME or primary generalized. We have a had a bad year. Since June 2008 he has had 4 seizures. the latest being 2 days ago. He is on 500mg of Lamictal. I'm not sure the Lamictal is the right drug but he is able to do well in college as he doesn't seem to have brain fogs.
I'm scare what is going to happen when we see the neuro next month because I don't want my son to deal wth unmanageable side effects.