Epilepsy Foundation

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Parents of Teens

This forum is for parents of teenagers with epilepsy. The special issues facing teenagers - driving, dating, college, independence - can be difficult for any parent and are multiplied for epileptic teens. Lets talk about it and share!

Members: 59
Latest Activity: Sep 8

Discussion Forum

teens with epilepsy

Started by Ruthanne Iliff. Last reply by Ruthanne Iliff Sep 8. 7 Replies

Hey Darby,My daughter started getting full grand mal seizures at age 12. The medication she went on only seemed to make them worse. We have some horrible times in middle school and the beginning of…Continue

Shaking hands

Started by Shirley Knasel Jul 28, 2013. 0 Replies

My 15 year old son has been on Tegretol XR for years. He takes 500 in the AM and 600 at night. He's status post left temporal lobe resection and amygdalohippocampectomy 3 1/2 years ago. His hands…Continue

Advice for a Newbie.....

Started by Darby Schulz. Last reply by Jennifer Taylor Jul 12, 2013. 6 Replies

Hi there....I am writing in hopes of seeking more information to continue my education on epilepsy. In March of this year my 16 year old son fell out with a full body tonic clonic seizure, after…Continue

13 year old Daughter

Started by Lawanda Barnes. Last reply by Michelle Walker Jun 25, 2013. 4 Replies

Hello all, I have a 13 year old daughter who has been diagnosed over a year ago with complex partial seizures.  I am still in shock as well as her:(  She was outgoing, fun loving, honor roll student…Continue

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Comment by Stephanie Scheeren on October 10, 2013 at 10:12am

@Deanna Terzo - My 16 year old daughter also has JME and I could also use some support. Please email me at parsoncreative@yahoo.com and maybe we can help each other :)

Comment by Deanna Terzo on October 10, 2013 at 9:58am

My daughter, age 17 has JME.  I'm just needing some support and insight to dealing with this type of epilepsy.

Thanks!

Comment by Jennifer Taylor on November 4, 2012 at 11:47am

You're welcome and I'm glad they connected. Celina is shy as well. I'll try to encourage her to get on FB this afternoon.  

Comment by Angie Coffman on November 4, 2012 at 11:18am

Jennifer,

I think my daughter found your Celina on FB :)  I don't think they have had a conversation yet but baby steps.  Taylor is a little shy and has trouble making the first move.  I hope they can help each other through this.  Thank you again! 

Comment by Dorothy Martin on November 1, 2012 at 7:06pm
jennifer,
my daughter was driving a year before her seizures started. she hasnt driven since. dr told us that she will never be able to drive again. at first it was real depressing for her but now she understands it is safer for all if she doesnt she doesnt have auras and since her brain is so active the seizures break through..
kids can be cruel but it has matured her. she now knows who her true friends are. i used to stay awake crying at night but now i know i cant always be there for her.
all i know is our kids have been given a uphill battle but they are strong insperational kids
Comment by Jennifer Taylor on November 1, 2012 at 6:46pm

Dorothy, 

I'm so sorry that your daughter lost her friends in high school. I had a couple of friends in high school who had seizures and I can't imagine abandoning them like that. I don't understand people these days. My daughter is a freshman in high school, and she is really struggling to make friends. The fact that your daughter is able to run track in college is a HUGE inspiration to me. It lets me know that my daughter may be able to do more when she's older as well. She's a little disappointed that she can't take Drivers Ed right now, but it may still come later on when things are better. This summer she had planned to take a lifeguard class since she used to be on the swim team, but had to drop it when her seizures started back. 

Comment by Jennifer Taylor on November 1, 2012 at 6:40pm

Angie,

My daughter is 15 and is going through similar issues like your daughter. She is currently taking 200mg 1x per day of Zonizimide, 300 mg of Neuronton 2x per day, 40mg of Vyvanse 1x per day. They also put her on birth control b/c we feel the hormone imbalance is what causes her Tonic-Clonic seizuress, since they always occur around PMS and/or during her cycles. When she first started the Zonisimide, she had lots of mood swings and cried a lot, but I believe she has since adjusted and seems much happier now. She also suffered from severe migraines, but they have gone away as well with the increase in Neurontin. The internal/external epileptic activity that we saw without Zonisimide stopped when we added the Zonisimide. She's been on it since Aug 1st. My daughter is not on this forum, but she is on Facebook. If your daughter is on Facebook, I think it would be good for them to have each other to talk to and share their experiences with--since they would understand each other. My daughter also has a few short term memory issues, but those seem to be getting better now. We are still fighting with her school and trying to get them to understand why she might know an Algebra problem or history fact today and it may slip her mind tomorrow. I don't think the school gets her and we even have an IEP for her. Her name is Celina Taylor, but there are lots of Celina Taylors on Facebook. Since there are several under her name, you can try doing a search on me, I'm under Jennifer Hudson Taylor. I told her about your daughter and she will look for the friend request if your daughter sends her one. Keep hanging onto your faith. We are a praying family, too. 

Comment by Dorothy Martin on November 1, 2012 at 5:11pm

Angie,

I can relate to you.  My daughter has intractable generalized epilepsy.  She is almost 19 and she was 17 and 1 month when she had her first grand mal.  I think the internal seizures started the prior month.  My daughter does not like to talk to anyone about her epilepsy.  She lost almost all her friends in highschool due to them watching her seize at school.  She is now in college but it has been a struggle with her memory.  She has had some outward seizures but her eegs show she has constant internal seizures. I feel its the meds and seizures causing her memory problems.  She is currently on 200mg 2x daily of zonsimide 300 mg 2x daily of limital and 200 mg 2x daily of vimpat.  She also has the VNS implant at a really high setting and it goes off every 1 minute and a half for 30 sec.  The VNS has been a blessing for her.  We are so fustrated with her memory loss that we are planning on finally asking the dr. to get her off zonsimide.  We think that is the med causing the most side effects.  We are just scared what they will put her on instead.  Her college is 3hrs away from home. 

My daughter joined the school track team and she is loving it.  Only the coach knows about her seizures so she feels like she has a fresh start.  (I just hope she can stay on the team because of grades).  My suggestion is for your daughter to find something that interests her and pursue it.  It will make her happy.  I know my daughter smiles more now then ever even with all her difficulties.

Comment by Angie Coffman on November 1, 2012 at 12:31pm
A message from Angie Coffman to all members of Parents Talking w/Parents on Epilepsy Foundation!

My baby girl who is a super sweet, loving, caring, beautiful 16 year old has Primary Generalized Epilepsy. She was on Lamictal but had to change medication since she was still having seizures in her sleep and couldn't tolerate the increased dosage. She is now on Zonisamide and it has made her a sad, scared emotional basket case. We had increased dosing due to seisure activity to 6 pills 600mg per day and reduced to 500mg because my baby couldn't stop crying all the time. So now this morning her pupils were huge and she said she felt strange but no twitching of her eyelids (her tell of sz) call Neurologist and now he says decrease down again to 400mg (2 in the am and 2 in the pm) I try so hard to keep her upbeat and positive but she is struggling so hard to deal with everything along with not being able to drive is pushing her deeper into darkness. I trust in my God I do have faith but watching her is so hard for me. I have told her about this site but up until this month she wouldn't even hear me about it. What do I do to show her people, kids her own age have the same thing or similar that she does? She knows she is loved but she still feels alone because we really don't know what it feels like to have epilepsy. I get that I just want to give her the tools she needs to survive and not feel so alone. Suggestions?
Comment by Angie Coffman on May 11, 2012 at 2:02pm

Well almost 2 weeks on new seizure medicine and I can totally see a difference in my Taylor.  She seems more rested and happy dear Lord let it continue to improve.  This is her first weekend away from me since she was diagnosed with the seizure disorder so I'm a little nervous but I am trying so hard not to smother her or let her see just how much I do worry.  I have tried to stress the importance of her taking her medicine on time while she is away but I'm a little ehhh about her actually doing it.  Can you tell I have some control issues?! lol laugh or cry I guess.  Say a little prayer for us and my sanity to make it through the days when she is not with me.  God give me strength and knowledge.

 

 

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