Community Forum

Topic: Parents & Caregivers

Created By: carriemceachin | 11/2018 | 2 Comments

Topic:
Diagnostic Dilemmas and Testing
Hey everyone. I could really use some advice on what to do for my two-year-old son. It’s a long story, so here we go: a couple months ago my son...

Created By: Elljen | 11/2018 | 0 Comments

My son is on day one of a 72-hour ambulatory VEEG. He's hanging in there, but not happy and feels like it's going to be a LONG 72 hours. Any tips for dealing with this? So far the...

Created By: mdmom914 | 11/2018 | 3 Comments

Hi-
My daughter is 8 and was diagnosed with absence seizures yesterday. It was only a week ago I was sure something more than daydreaming was happening so I am feeling very overwhelmed with...

Created By: VictoriasMommy28 | 10/2018 | 1 Comment

Hello,
My daughter has intractable epilepsy. She is currently on Vimpat, Felbamate, Phenobarbital, and Clonazepam.
We have noticed after felbamate she is very hyperactive, and does not...

Created By: Tinafish | 10/2018 | 4 Comments

My 8 year old son was diagnosed with epilepsy at age 2. He has nocturnal epilepsy. But has been doing well. His teacher called yesterday saying he has not been acting him self the last two days,...

Created By: Nickvinci3 | 10/2018 | 3 Comments

Hey everybody my 5 year old daughter has been struggling since birth with seizures since a birth injury of hypoxia causing brain damage, developmental delays, seizures, and horrible behavior...

Created By: Pattyann3 | 10/2018 | 1 Comment

Our son, 14, was diagnosed with tonic clinic seizures that accure mostly in his sleep. Has anyone tried monitoring devices? We are looking at a few for the Apple Watch that will alert if there...

Created By: Maggies Mom | 09/2018 | 0 Comments

Hi All
My Maggie has been having seizures off and on for at least a year. We have no official diagnosis and some docs have said shes faking it. Shes 3. She was seen by a chiropractor who...

Created By: Jade#20 | 09/2018 | 3 Comments

Where to start, my daughter age 14 has been recently diagnosed with IGE. Idiopathic Generalized Epilepsy. So recent that her first tonic-clonic seizure was August 11th. The neurologist felt...

Created By: mvm1185 | 09/2018 | 3 Comments

Hi everyone this is my first time on this chat, my daughter was diagnosed with Absance Seizures last year she is 8 years old. She started off on Ethosuximide for several months and then prescribed...

Created By: ktetreault1 | 09/2018 | 0 Comments

Hello Everyone!
I have recently created a website for people with Epilepsy, Photosensitivity, and sensory disabilities. It was created to provide people with a better understanding of what...

Created By: MinnesotaMom | 09/2018 | 3 Comments

Hi, I have a 21 year old college daughter who had her last seizure 2 weeks ago. After her seizures, the law is to not drive until three months after. After this last one though, she has been...

Created By: Danalou327 | 08/2018 | 1 Comment

Hi. I am new here, and new to epilepsy in general. Earlier this year, my 19 year old daughter was diagnosed with JME. It probably surfaced about 3 years earlier. A couple years ago, she randomly...

Created By: Mhinojosa12 | 08/2018 | 0 Comments

I have some questions!

Created By: ResearchinNE | 08/2018 | 0 Comments

RESEARCH STUDY- one-time, one hour-long, interview!

Are you a caregiver to someone with epilepsy??

If so, you may qualify for a study in the Providence, RI area. There is NO...

Created By: Casey54 | 08/2018 | 1 Comment

My mentally handicapped Sister had 3 back to back to back seizures in May about 3 mins each and 2-3 mins in between. Since then her appetite has gone to nothing. She also had compression fractures...

Created By: Besselli9 | 08/2018 | 5 Comments

My husband has recently been diagnosed with temporal lobe epilepsy. He has had focal seizures since he was a teenager but his parents never took him for help. He had his first grand mal seizures...

Created By: sarahbethsummers | 08/2018 | 0 Comments

Seminar in Nashville on Sept. 15 for students on doing college with epilepsy!
Details/Register online: studentswithepilepsy.com
*Parents and caregivers welcomed!

Created By: brockenbach | 07/2018 | 2 Comments

I have two children, ages 6 and 8, with focal epilepsy. My son age 8 is looking for kids his age to talk to about his condition. We live on the upper west side of New York City. Please let me know...

Created By: Kathy McMahon | 07/2018 | 3 Comments

Hi Community,
My 7 year old daughter has focal seizures, often at night time. She makes very little movement, typically throws up, spikes a fever and has great difficulty breathing. She is...

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