Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Topic: Parents & Caregivers

Cluster Seizures

07/2020 | 0 Comments

Hi all, New here, my Dad lives with epilepsy. Last August he ended up having a tonic chronic seizure for the first time in 11 years. We thought we...
Wrote a book

06/2020 | 0 Comments

I wrote a short book. hoping to sell some copies and get a sense of achievement. I sat down and wrote my heart out. Unfortunately it isn't selling...
Genetic Code Help, Hypo Prolinemia

06/2020 | 7 Comments

We have a new diagnosis for my 6 month old grandson, hypo prolinemia. It's type 1, very rare, and apparently causing his seizures. I don't see it on...
Family with brother/son with 1st seizure.

05/2020 | 2 Comments

Hello my brother just had his first seizure today! They discharged him from the hospital and as a family, we are worried this may be too soon. We also...
Duration to find an effective medicine?

05/2020 | 2 Comments

How long might it take to find an effective anti-seizure medicine for an infant? We're on our 2nd med, since baby's first seizure about 2 months ago...
Hand Clapping?

05/2020 | 2 Comments

I'm grandmother to a 5-month old with epilepsy. The parents use loud hand clapping to help bring the baby out of his seizures. Is anyone else doing...
Nighttime sleep practices

05/2020 | 1 Comments

My daughter has epilepsy. She is 2 and has slept with us since she was born. We have discussed transitioning her to a toddler bed, but we worry we...
BRE and Drool

04/2020 | 1 Comments

Looking for input from other BRE parents, My kid is drooling a lot during the day, especially when he's had a hard time sleeping the night before. No...
Notice a certain smell

04/2020 | 6 Comments

Has any one ever notice that a person who has just had seizure or during a Seizure has a certain smell about them. My son has epilepsy and I am...
3 year son

04/2020 | 1 Comments

MRI Shows heterotopia anb small cerbellum. Has seizures since 6 months of age. On two medicines Levitrasam and clobazam. Does not sit or crawl. Does...
My 2 year old

03/2020 | 1 Comments

Hello all, My two year old son was recently diagnosed with epilepsy, so far we've only witnessed absence seizures. Because epilepsy runs on both sides...
vit B

02/2020 | 2 Comments

Hi everyone i have 9 year old son diagnosed with partial complex epilepsy 5years ego.Over the summer he have increase in seizures. He was put on vit D...
Needing support

02/2020 | 2 Comments

My daughter was diagnosed at age 8 was seizure free for two years on keppra x2 a day since and had a grand mal yesterday at age 10 feeling overwhelmed...
Newly Diagnosed Child & OVERWHELMED

02/2020 | 4 Comments

My 11 year old son was diagnosed in January. How do the parents cope with this? I am in constant fear & stress over my child's safety. I constantly...
Behavioral Issues

02/2020 | 2 Comments

Hello - I am a parent of an adult son whose has had epilepsy since he was six years old. All his life he exhibited behavioral problems. The question...
Depakote to zonisamide????

02/2020 | 1 Comments

My 15 year old son is making the switch from1500mg of depakote to 300mg zonisamide. We are in week 1 of 3 for this transition. The reason for the...

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