Community Forum Archive

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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