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Community Forum

Topic: Parents & Caregivers

Created By: olesonfam22 | 02/2020 | 2 Comments

Our 9 year old son was diagnosed in November with partial complex Epilepsy. He started having seizures in Sept/Oct, but they were mild at first and we didn't catch on until late Oct....

Created By: gaspatio | 01/2020 | 0 Comments

Hi. My husband was diagnosed with epilepsy several years ago; general and localized epilepsy. He started having seizures very shortly before we met, so we are basically learning about epilepsy...

Created By: amlar521 | 01/2020 | 3 Comments

Hi everyone-

My son suffers from focal seizures and his symptoms change with every episode. I am just reaching out to see how other parents/caregivers find strength to help care for their...

Created By: Christieene | 01/2020 | 1 Comment

Does anyone have any recommendations for a 20 year old in need of occasional supervision in Montgomery County Maryland.
When his meds is adjusted he can’t be left alone.

Created By: Colleen1854 | 01/2020 | 2 Comments

Hi everyone, I am new to this forum. My daughter is 6 years old and she has been having seizures since she was 8 months old. She has tonic clonic seizures that resist emergency medication so every...

Created By: birdman | 01/2020 | 1 Comment

I got this email from a friend:

Do you think you could ask a question to the Epilepsy Foundation. How to get an autistic person to take his meds.
Wesley just refuses to take his med...

Created By: SDAD2 | 01/2020 | 3 Comments

Son is 10 yrs old. Doctors insist there are no issues with him receiving vaccines. His mother is adamantly in disagreement to the point of wanting to homeschool to avoid the vaccines. His...

Created By: ajsmom1106 | 01/2020 | 2 Comments

My daughter is 17 and will be going away to college in the fall. She plans to go 8-16 hours away as they are the only schools that offer her desired major. She had been seizure free for the last 2...

Created By: mythoughtis | 12/2019 | 2 Comments

Our 28 year old son is considered stable since his seizures are only every few months to 2 years or so. Just enough to create havoc since he lives and works 4 hours away. It happened again this...

Created By: epilepsymom17 | 12/2019 | 1 Comment

My 2 year old daughter has epilepsy. Her seizures are still not 100% uncontrolled, so we still see breakthroughs. Every few months, she has a tonic seizure that will cause her to stop breathing...

Created By: eschatten | 12/2019 | 1 Comment

Hi - our son is suffering from terrible headaches since his last seizure - - he was just recently diagnosed with epileptic tendencies - we thought his seizures were fevrial until a recent eeg. he...

Created By: dps | 12/2019 | 1 Comment

Hello -

Our three year old has had two episodes in which he goes very limp (no convulsive activity), his eyes roll straight back to the top of his head then his eyes shut, and his breathing...

Created By: epilepsymom17 | 11/2019 | 1 Comment

Does anyone have a child who coughs for several minutes after seizures? If so, do they have TLE?

Created By: JJ100118 | 11/2019 | 1 Comment

My son started having focal seizures second day of his life. All his test results were normal and DNA results show one variance in one gene but they couldn't conclude that is the cause of his...

Created By: coopercav | 10/2019 | 4 Comments

Where to start, can't be the first to write that!
Well, the current issues surround my daughter learning to drive and the hazard test, but are more general.
Background. My...

Created By: Cutmygrass | 10/2019 | 4 Comments

My now 17 year old son suffers from Absence seizures and is resistant to all medication. He has at least three seizures per week. At this point we are exploring surgery but we have been told...

Created By: Lori10505 | 10/2019 | 2 Comments

Hi everyone. I am brand new here not sure if I belong here or not just yet.

So today by my (14 years with autism, ADHD, and Tourette’s) saw a neurologist at the request of his...

Created By: Rdb | 10/2019 | 3 Comments

Hello, I'd love to hear from other parents and caregivers of young adults who have epilepsy, and whether or not they work outside the home, or do any sort of volunteering just to have...

Created By: MirzaBaig | 10/2019 | 1 Comment

3 years son with Atonic Seizures. He is Currently on Topramate, Depekene and revitol.
He was diagnosed with Partial focal seizures at the age of 2 . Used levetracetum for 2 months but had...

Created By: epilepsymom17 | 10/2019 | 3 Comments

My 2 year old daughter was just diagnosed with epilepsy. Every time we are in the car, she has a seizure. She also has moments where she will hold her knees together and her hands will ball up...

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