Epilepsy Foundation

Parents Talking w/Parents


Parents Talking w/Parents

A place where parents can post information about their beautiful children who have Epilepsy.

Members: 1195
Latest Activity: Dec 14, 2015

Discussion Forum

Scarey seizure?

Started by Krys. Last reply by Amy Dec 14, 2015. 3 Replies


Started by Caitd. Last reply by Nicole Heideman Dec 13, 2015. 5 Replies

Phoebes eeg results

Started by Nicole Heideman. Last reply by Nicole Heideman Nov 22, 2015. 4 Replies

Comment Wall


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Comment by Kari Lynne Brauer on April 6, 2015 at 9:59pm


You did not mention much about talking with your doctor. This is something you should ask him/her. Talk to them until you feel comfortable, ask questions. That is what they are their for. To inform you, give you advice. Then when you are ready, you make the choice.  

Comment by Jessica Kellem on March 27, 2015 at 11:07pm

Hello,  I have a 4 year old daughter who has non-convulsive status epilepticus.  It is from a stroke she had at birth.  It is in her occipital lobe.  They are considering occipital lobe resection.  I keep looking stuff up on this procedure and it keeps telling me it's rare, but that is about it.  Does anyone know of or have had this done?  PLEASE I am terrified and would like any information.

Comment by beth andrew on March 27, 2015 at 2:06pm
I got an email from a Jessica kellam through the parents helping parents group asking about occipital lobe resection. I clicked on it like I usually do, but it took me to this main page and I don't see her post here. I would like to respond because my daughter had that surgery and not many have experience with it so I would be glad to discuss! So...if you're here, Jessica, respond.
Thanks, Beth
Comment by Nicole Heideman on March 16, 2015 at 9:21pm
Your welcome. Glad to hear he took her off of it. Are trying to figure something out for my daughter is always fun. She does have Mild obstruction sleep apena witch it took a few times seeing her sleep doctor to finally listen..she now sleeps with a cpap witch she does awesome with it. Good luck and let me know how it goes...my daughters neurologist sent her for her first sleep study...it's always frustrating when they don't listen since like you said we are with them more than them. Always fun
Comment by Maria Davila on March 16, 2015 at 2:16pm
Thanks Nicole! I talked to his epileptologist and he said to do not give the singular again but told to increase trileptal to 10 cc a day (he was on 7.5 cc a day before). Jorge also had a pediatrician appointment today and after explaining what happened to her she said she has seen kids in general get hyper, sleepless and with nightmares after taking singulair. I am lucky these docs did listen to me and, because epilepsy is a disease of a lot of unknowns, no one can say you and I are wrong is we are the people who spend more time with our kids. Our previous neurologist thought I was crazy asking for a sleep study (Jorge's trigger is lack of sleep) and he was surprised to see he did have sleep apnea. Just telling you to follow you instincts because docs are people too and sometimes they are wrong. Thanks again for your support as we are dealing with this again!
Comment by Nicole Heideman on March 15, 2015 at 10:04pm
Phoebe was on singular also and I think she had a bad very bad reaction to it and I think she was having seizures while on it also, but neuro wouldn't beli me or her teachers but stopped it before her neuro did a 24hr ambulatory eeg on her but they didn't catch anything. But every child is different. They talked about putting her back on it but I'm leary with that because of what happened before even with her on an all different seizure med now. Just wanted to let you know that. Good luck
Comment by Maria Davila on March 15, 2015 at 4:06pm
Jorge just had a complex partial seizure after been seizure free since May of last year. He was playing with the next door boy and the boy came to us to tell us. He did not want to nap and was overheated playing outside. When it happened they were playing a video game. We think this was a perfect storm but we also think another medication maybe played a role. He was taking singular since Tuesday and for 3 days in a row he was sleeping terrible and was all hyper. We read that singular may potentiate the effect of trileptal, the med he takes so we stopped it on Thursday. He slept ok on Thursday night and great yesterday but he refused to take his nap, as 3 year olds tend to do when having fun, and we let him; stupid move. We are seeing the neurologist tomorrow and we hope this is a fluke and not another period of seizures as he has when this started. Please let me know if you have any experience with this!
Comment by meredith froese on February 20, 2015 at 1:14pm

I started having seizures at six in ages 12 to 16 I had 8 seizures throughout the rest of my life I had 5 seizures and two of them were when I had three week old baby they said it was from hormone changes .

Comment by Cindy Myers on February 19, 2015 at 10:31pm

Hi everyone! I have a soon to be 13 year old boy. He has had epilepsy since he was 14 months old. Does anyone have any experience with an increase in seizures during puberty? My son is having TC's again and we believe along with his Neuro that it's due to puberty. Also, thank you to  Kari Lynne Brauer for your post about raising up teenagers!! ")

Comment by Kari Lynne Brauer on January 26, 2015 at 5:50pm

I applaud both of you ladies,

Raising up teenagers is hard work. One thing I learned as my husband and I raised up our 3 kids is no matter how much they fight and resist, they are testing you. They are looking for boundaries, trying to find structure. They will fight you every step of the way. There will be yelling and screaming. Talk to your friends and well respected people in your church. Seek wisdom from those who have raised their kids. Seek wisdom from your pastor. Sit down with  your family, ask them to listen, tell them you just want someone to hear. 

 Take time to hear out hear out your teen.Let them know you are going to think about.. Come back in a calm manner. If he, she does not like that answer, refuses to respect it, then have a discipline already in mind. A responsibility of some sort. Maybe they do not drive yet. But a friend might need a babysitter. They will have to watch the little kids for an hour or... Maybe they might like kids, so garbage duty or laundry for a week or two... It has to be a responsibility. If it gets worse, then bring in elders, pastor or wise people from the church to council you and your teen. Try your best NOT to get into a screaming match with them. Head to the bathroom to take five for yourself and get reconnected. Then go back out and try again. Remember this all takes time. PRAY,PRAY and PRAY some more. Keep in the WORD of GOD. You both will do well, remember growing up is hard work. 


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