Epilepsy Foundation

Parents Talking w/Parents

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Parents Talking w/Parents

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

Members: 1186
Latest Activity: yesterday

Discussion Forum

ESES and CSWS diagnosis and experience

Started by Sarah Blanchette. Last reply by Sarah Blanchette yesterday. 2 Replies

Processing

Started by Nicole Heideman. Last reply by Nicole Heideman yesterday. 15 Replies

need advise

Started by Jackie Heck. Last reply by Robert William Oct 6. 5 Replies

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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

https://www.youtube.com/watch?v=CX7T22B-8OQ

or just type in Josiah's Hemispherectomy in Google 

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

Mothers,

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,

Natalie

https://www.surveymonkey.com/s/WLM2YT5

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. 

Comment by Amy on April 3, 2014 at 5:27pm

I picked up a script and asked the pharmacist about the next medication pill options (chew/dissolve/etc) and from that start the pharmacist was a font of useful information about all sorts of things (much of which I've heard here), but also there was affirmation that medication issues people talk about going through isn't strange.  Hope you all know a good pharmacist!

 

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