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: 1191
Latest Activity: 39 minutes ago

Discussion Forum

Left temporal lobectomy

Started by Or. Last reply by Or 39 minutes ago. 7 Replies

High dose steroid pulse treatment

Started by Sarah Blanchette. Last reply by susan walter 5 hours ago. 2 Replies

Possible Seizure

Started by Nicole Heideman. Last reply by Nicole Heideman yesterday. 7 Replies

Comment Wall


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Comment by Cathy G on November 6, 2014 at 10:24pm

Hi everyone, I wondered if there are any of you that put your child on the ketogenic diet and what kind of results you have seen? My son was diagnosed with epilepsy almost 2 years ago and has been on several different medications, with the doses increased and they continue to not be effective. He has had about 4 grand mal seizures, the last one just about a month ago. His medication was increased and things were quiet for a while, now we're back to more seizures. Does anyone else experience this? (Sorry for so many questions!) Thank you so much, Cathy

Comment by MeganN on October 11, 2014 at 10:10am

Thanks Mom22 and Amy!  I am not tech savvy at all.  I thought I was adding the link.  Let's keep each other informed when the third edition comes out!

Comment by Mom22 on October 11, 2014 at 10:02am

Try this for Legal Rights of Children with Epilepsy in School and Child Carehttp://www.epilepsy.com/sites/core/files/atoms/files/Legal%20Rights...

Comment by Amy on October 11, 2014 at 9:53am

Your link is undefined, but googling the title works. I have often linked people to the copy on wrightslaw which is from 2011, always keen to know if a third edition comes out.

Comment by Jackie Heck on October 4, 2014 at 7:23pm
Been awhile since I posted... but my 5 year old baby girl is not doing any better. She had and eeg done and it showed a lot of seizures. Besides that she has been sick with pneumonia, strep throat and pink eye... praying she will get well and stay well soon then maybe we can get the seizures to stop.
Comment by Caleb and Natasha B. on October 4, 2014 at 6:41pm

Hey everyone

Just though I would share our story of how things turned out with our son's epilepsy and how an Hemispherectomy changed our life.  

Please watch our youTube video


or just type in Josiah's Hemispherectomy in Google 

Comment by Natalie Moreno on October 2, 2014 at 10:41pm


Please take this anonymous survey this weekend, 10/2-10/5. As I finish my college degree, I'm researching and projecting about career possibilities for my future and the future of my family. My goal is to hear from other Moms who are also juggling work, being a parent and caring for your child with seizures. This survey is brief, completely anonymous, and I greatly appreciate your input. My young son has a seizure disorder and I'm a single parent just trying to figure this out...

Thank You,



Comment by Darsey Kohl on July 7, 2014 at 8:47am

i was told by an epilipsy doctor at childrens the best results is flonase its a steriod and doesnt trigger seizers

Comment by Darsey Kohl on July 7, 2014 at 8:45am
Comment by Missi Wallace on April 8, 2014 at 11:10pm

Rachel, my gs gets a sinus infection every time we try anything like Sudafed....it's not an allergy med but just dries mucus, allowing a buildup of dry yuck in the upper sinus cavities that doesn't drain, but that irritates worse than the dribbling nose draining the excess. We've had success with a low dose of Zyrtec (1/2 a child's pill once a day) and Nasonex ( 1 squirt each nostril once a day, easy sniff  - not pulling it into the upper sinus cavities). He's cleared up so he only needs the regemine every few days instead of daily, with no infections.

Ask your doc about the strength of the allergy meds, and cut them back to just where they work without causing other issues....sometimes "less is more". Just IMHO from what I've been thru. 


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