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My Daughter and college

My daughter will be going away to college next week and has partial complex seizures at least three times a day.  The school knows, the counselor knows, her roomate knows, the teachers know, etc..., the I think I have them all covered at this point.  I am really worried.  Do you have any advice for me?

Comments

Re: My Daughter and college

Submitted by dtGirouard on Tue, 2010-08-17 - 22:00

Hello,

I am 20 years old and I experience a constant complex partial seizure at all times everyday.. the intensity of it fluxuates based on many factors... (sleep,stress, environment. etc.) I take 750mg of Depakote ER a day. I am controlled for the most part but not 100%.. I've come to the agreement with my doc that any more meds will make me start to feel sedated.. Anyhow I am going into my 3rd year of college.. Although i do not live there, i have a half hour commute. I drive and im approved to drive as I have a sense of control over the intensity of my lingering CPS. I have also done the same.. i let my Professors and some peers i come in contact with know about my condition and experiences and I've recieved nothing but good understanding from all of them. There have been days where i wouldn't allow myself to drive to school and I would contact the professors via personal cell phone or email and would request the day's lesson plan and work to my email. The epilepsy hasn't had too much of a hinderence on my academic career and sometimes it helps, ironically, turns out for me when the overactivity in my left temporal lobe is higher than usual it allows me to understand and absorb lectures quite well and more efficiently...strange. Anyways i saw your post and I figured id share my status and hope it brings some peace of mind. If your daughter is rescourceful enough I'm sure she'll be responsible enough to stay out danger.

Thanks, Daniel

Hello,

I am 20 years old and I experience a constant complex partial seizure at all times everyday.. the intensity of it fluxuates based on many factors... (sleep,stress, environment. etc.) I take 750mg of Depakote ER a day. I am controlled for the most part but not 100%.. I've come to the agreement with my doc that any more meds will make me start to feel sedated.. Anyhow I am going into my 3rd year of college.. Although i do not live there, i have a half hour commute. I drive and im approved to drive as I have a sense of control over the intensity of my lingering CPS. I have also done the same.. i let my Professors and some peers i come in contact with know about my condition and experiences and I've recieved nothing but good understanding from all of them. There have been days where i wouldn't allow myself to drive to school and I would contact the professors via personal cell phone or email and would request the day's lesson plan and work to my email. The epilepsy hasn't had too much of a hinderence on my academic career and sometimes it helps, ironically, turns out for me when the overactivity in my left temporal lobe is higher than usual it allows me to understand and absorb lectures quite well and more efficiently...strange. Anyways i saw your post and I figured id share my status and hope it brings some peace of mind. If your daughter is rescourceful enough I'm sure she'll be responsible enough to stay out danger.

Thanks, Daniel

Re: My Daughter and college

Submitted by wntr89 on Thu, 2010-08-19 - 17:12

Daniel:

Thank you so much for you're advice.  When you say you experience a constant complex partial seizure at all times everyday, do you mean that you have them several times a day?  My daughter has 4 to 5  a day, which last about 5 seconds where she will stare and then she is unaware of her surroundings for another 30 - 40 seconds and then is very tired after it happens.  She does not have any warning that it will happen.  She is unable to drive, because she is unaware for those short periods of times throughout the day.  You have definately brought me some peace of mind, although her Doctor just switched her to a new medication and it bothers me that she would be away at college and I won't be able to observe her for possible effects.  It is scary for me to let go when she has these problems.  I will take your advice and try to relax.  I hope my daughter will enjoy her time at college and learn and grow, because she has been quite homebound since she was first diagnosed with epilepsy 2 years ago.  Thank you again Daniel.

 

Daniel:

Thank you so much for you're advice.  When you say you experience a constant complex partial seizure at all times everyday, do you mean that you have them several times a day?  My daughter has 4 to 5  a day, which last about 5 seconds where she will stare and then she is unaware of her surroundings for another 30 - 40 seconds and then is very tired after it happens.  She does not have any warning that it will happen.  She is unable to drive, because she is unaware for those short periods of times throughout the day.  You have definately brought me some peace of mind, although her Doctor just switched her to a new medication and it bothers me that she would be away at college and I won't be able to observe her for possible effects.  It is scary for me to let go when she has these problems.  I will take your advice and try to relax.  I hope my daughter will enjoy her time at college and learn and grow, because she has been quite homebound since she was first diagnosed with epilepsy 2 years ago.  Thank you again Daniel.

 

Re: My Daughter and college

Submitted by snowwoman on Tue, 2010-08-17 - 22:51

I think you might want to approach the college disability centre or special needs office, or whatever it is called in your daughter's college so that she can get accommodations if that is neccesary. Or is that what you mean when you say "the school knows"?

I don't know how her CPS manifest, but unless she is running around taking off her clothes, I'll say she'll soon settle in just fine.

Maybe having a chat with your daughter about emergency plans, boundaries (if this is a new diagnosis) of how much partying, staying up late etc is advisable, as well as how to restock her medication might help? It might also be wise to chat about drugs and alcohol if you haven't already done so. Many young people tend to experiment a lot with these when they go away for the first time, so strategies on how to say no (if that is the agreement), or how much is ok might also help.

Good luck.

I think you might want to approach the college disability centre or special needs office, or whatever it is called in your daughter's college so that she can get accommodations if that is neccesary. Or is that what you mean when you say "the school knows"?

I don't know how her CPS manifest, but unless she is running around taking off her clothes, I'll say she'll soon settle in just fine.

Maybe having a chat with your daughter about emergency plans, boundaries (if this is a new diagnosis) of how much partying, staying up late etc is advisable, as well as how to restock her medication might help? It might also be wise to chat about drugs and alcohol if you haven't already done so. Many young people tend to experiment a lot with these when they go away for the first time, so strategies on how to say no (if that is the agreement), or how much is ok might also help.

Good luck.

Re: My Daughter and college

Submitted by wntr89 on Thu, 2010-08-19 - 17:18
Thank you so much for your advice.  We have spoken to the counselor and the work program manager and her floor aids and she has emailed her teachers to let them know as well.  When she has a seizure, she stops and stares for about 5 or 6 seconds and then does goofy stuff for another 30 - 40 seconds before she comes back.  Sometimes she will walk away or lay down or pick at her clothes.  Sometimes, if she is walking, she will stumble and fall or drop what she has in her hands, etc... I have talked to her about other drugs and alcohol and she seems to be aware of the fact that those could really hurt her, especially with all the medications she currently takes for these seizures.  We have also had her refill her meds for a couple of months now, in preparation of her going away to college.  I hope it will all work out!

Re: My Daughter and college

Submitted by snowwoman on Sat, 2010-08-21 - 10:51

Hi wntr89:

Sounds like your daughter is all set! I have CPS as well, so they say. Was diagnosed in university actually, and I am going into my final year now. I too stare and have been known to drive profs crazy when I 'ignore' them, but thanks to the frustration of one prof, was finally diagnosed when one well, 'smacked' my arm. She then sent me to bed (ha ha!).

Keep profs in the loop. I really hate doing it but I understand I need to. Because if I pass out again (my head went smack on the table in the middle of class), I would have saved myself the hassle of having to explain to paramedics what I don't remember happening. I still don't know if the passing out and the seizures are related, but my instructions to the profs are the same: if I am 'unconscious, whether starring or on the table, ignore, unless I just don't come out of it.

Your daughter's way ahead of me, so I am confident she'll be fine. :)

Chin up!

Hi wntr89:

Sounds like your daughter is all set! I have CPS as well, so they say. Was diagnosed in university actually, and I am going into my final year now. I too stare and have been known to drive profs crazy when I 'ignore' them, but thanks to the frustration of one prof, was finally diagnosed when one well, 'smacked' my arm. She then sent me to bed (ha ha!).

Keep profs in the loop. I really hate doing it but I understand I need to. Because if I pass out again (my head went smack on the table in the middle of class), I would have saved myself the hassle of having to explain to paramedics what I don't remember happening. I still don't know if the passing out and the seizures are related, but my instructions to the profs are the same: if I am 'unconscious, whether starring or on the table, ignore, unless I just don't come out of it.

Your daughter's way ahead of me, so I am confident she'll be fine. :)

Chin up!

Re: My Daughter and college

Submitted by miriam_hospital123 on Tue, 2010-08-17 - 23:47

I can only imagine your worry. You really need to have a talk with your daughter and advice her of what she should do at the first sign of the attack. She needs to cooperate with you on this for you can't keep her on your house.

- Miriam (<a href="hospitals123.com">hospitals</a>)"

I can only imagine your worry. You really need to have a talk with your daughter and advice her of what she should do at the first sign of the attack. She needs to cooperate with you on this for you can't keep her on your house.

- Miriam (<a href="hospitals123.com">hospitals</a>)"

Re: My Daughter and college

Submitted by kherndon1 on Sat, 2010-08-21 - 23:34

Hello. Best of luck to your daughter. My daughter is in her second year of college. She has IGE ( Idiopathic Generalized Epilepsy) with Tonic Clonic seizures. She was doing really well her first semester last year and then just prior to the second semester she had a seizure and her Topomax was increased by double to 300mg daily. The side effects this has presented have been quite difficult. We kept hoping they would Level out. But the dificulty remembering and with concentration are unchanged. We are currently researching for an AED without these side effects. I am hopeful.

Remind your daughter of the importance of getting a full nights rest each night. My daughter has trouble getting enough rest which have been a major factor in atleast two seizures. Also, I would stress the imortance of taking her AED at the same time each day and keeping it on a schedule....Alarm on cell phone is a great reminder.

Good Luck. Hope all goes well for your daughter.

Take care, Karen

 

Hello. Best of luck to your daughter. My daughter is in her second year of college. She has IGE ( Idiopathic Generalized Epilepsy) with Tonic Clonic seizures. She was doing really well her first semester last year and then just prior to the second semester she had a seizure and her Topomax was increased by double to 300mg daily. The side effects this has presented have been quite difficult. We kept hoping they would Level out. But the dificulty remembering and with concentration are unchanged. We are currently researching for an AED without these side effects. I am hopeful.

Remind your daughter of the importance of getting a full nights rest each night. My daughter has trouble getting enough rest which have been a major factor in atleast two seizures. Also, I would stress the imortance of taking her AED at the same time each day and keeping it on a schedule....Alarm on cell phone is a great reminder.

Good Luck. Hope all goes well for your daughter.

Take care, Karen

 

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