Hi I am a mom of a 13yr old daughter that has had epilepsy since she was 6yrs old. We have tried many different medications over the years that have not controlled her nocturnal partial complex seizures with many side effects. Now that she is a teenager her seizures have gotten worse and more frequent. We recently took her to a different pediatric neurologist and she had a new MRI and EEG (not a very fun experience). We are now waiting for results to see if she is a canidate for surgery! (very scarry). I am looking online right now for other alternatives, but trying to keep an open mind. My daughter is having trouble sleeping at night and staying awake during the day, she is taking depakote and vimpat. Her grades are suffering and she is a very grumpy teenager with lots of attitude! Partly due to medication and partly personality. I need help and could use lots of support. Thank you all for being here!:clap:
Hello I am a newbie!
- Thread starter valpal
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Welcome to the Coping With Epilepsy Forums
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epileric
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Welcome Valpal
I remember my teens being pretty hectic myself, my parents never let me forget how grumpy I was.
I also used to like to sleep all day & had trouble sleeping at night. Recently I've discovered that Valerian tea helps both insomnia & lessens the chances of me having a nocturnal seizure. Some people do suggest using black cohosh, hyssop or lobelia to help seizures though.
Look around here. We've got tons of parents whose kids have similar issues to yours. In the meantime check out the list of alternative treatments we have for epilepsy.
I remember my teens being pretty hectic myself, my parents never let me forget how grumpy I was.
I also used to like to sleep all day & had trouble sleeping at night. Recently I've discovered that Valerian tea helps both insomnia & lessens the chances of me having a nocturnal seizure. Some people do suggest using black cohosh, hyssop or lobelia to help seizures though.
Look around here. We've got tons of parents whose kids have similar issues to yours. In the meantime check out the list of alternative treatments we have for epilepsy.
Endless
Even Keel
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Valpal,
Welcome to the forum! I'm glad you found us.
In here there are lots of parents with children with seizures. Some with teenagers. So you will have lots of company.
Is your daughter going to OHSU, or Providence Epilepsy Center? I assume one of those regional epilepsy centers if she is being evaluated for surgery. If she's not going there, here's a place to search for a regional epilepsy center near you (better care): http://www.naec-epilepsy.org/find.htm
Where is she in the testing and evaluation process? Has she had a functional MRI, or a PET scan yet? Have they pinpointed the source of her seizures?
In case your daughter is treated with surgery, here's a link to search for your hospital's rankings/track record on neurosurgery. Their data comes from the AHA (American Hospital Association) plus other data:
http://health.usnews.com/best-hospitals/rankings
There are lots of people in here who have had surgery. Some experiences good with no side effects, some with many side effects. Ask around, lots of people in here to help out.
Grumpy Teenager? Say it isn't so! lol....
Welcome to the forum! I'm glad you found us.
In here there are lots of parents with children with seizures. Some with teenagers. So you will have lots of company.
Is your daughter going to OHSU, or Providence Epilepsy Center? I assume one of those regional epilepsy centers if she is being evaluated for surgery. If she's not going there, here's a place to search for a regional epilepsy center near you (better care): http://www.naec-epilepsy.org/find.htm
Where is she in the testing and evaluation process? Has she had a functional MRI, or a PET scan yet? Have they pinpointed the source of her seizures?
In case your daughter is treated with surgery, here's a link to search for your hospital's rankings/track record on neurosurgery. Their data comes from the AHA (American Hospital Association) plus other data:
http://health.usnews.com/best-hospitals/rankings
There are lots of people in here who have had surgery. Some experiences good with no side effects, some with many side effects. Ask around, lots of people in here to help out.
Grumpy Teenager? Say it isn't so! lol....
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Hi Valpal, welcome!
I'm sorry you and your daughter are having such a tough time. It can be hard enough to be a teenager (or the parent of one) without having to deal with seizures and side effects too. Surgery is a big step, so I agree with Endless and Eric -- ask a lot of questions and make sure you have all the information you need before making a decision one way or another.
You might be interested in this thread, which talks about neurofeedback and nutritional approaches to seizure control: http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/
Best,
Nakamova
I'm sorry you and your daughter are having such a tough time. It can be hard enough to be a teenager (or the parent of one) without having to deal with seizures and side effects too. Surgery is a big step, so I agree with Endless and Eric -- ask a lot of questions and make sure you have all the information you need before making a decision one way or another.
You might be interested in this thread, which talks about neurofeedback and nutritional approaches to seizure control: http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/
Best,
Nakamova
Hi Endless,
Thank you so much for the info! Amanda is going to OHSU and she is seeing Dr. Roberts. She had and MRI and a EEG, she had about 20 seizures one night so I think they got enough footage! Her MRI did not show any scarring or leisions and we are waiting to see about the results on the EEG, we go back the end of January. She is going to be doing cognative testing with a neurophsycologist next month. I think the source of her seizures are coming from the back right side of her brain, they mentioned something about the temperal lobe but they need to do more research on the EEG.
Thanks for your help!
Thank you so much for the info! Amanda is going to OHSU and she is seeing Dr. Roberts. She had and MRI and a EEG, she had about 20 seizures one night so I think they got enough footage! Her MRI did not show any scarring or leisions and we are waiting to see about the results on the EEG, we go back the end of January. She is going to be doing cognative testing with a neurophsycologist next month. I think the source of her seizures are coming from the back right side of her brain, they mentioned something about the temperal lobe but they need to do more research on the EEG.
Thanks for your help!
RobinN
Super Mom
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I would suggest that you discuss neurofeedback as an alternative, before you consider surgery. My daughter did it off and on for about a year. That, and making nutritional changes, have allowed her to be seizure free for up to 8 months. It is non invasive, and also improves cognative functioning at the same time.
Nutrition does matter too. Rarely discussed in the doctors office
Nutrition does matter too. Rarely discussed in the doctors office
Dragongiraffe
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Hello Valpal, I am new here too with an epileptic husband. If I can ever be of help, please think of me.