8years old

Ella turned 8 in August, It’s been 2 years since weaning off Keppra. It has been 4 years since the last seizure. I still worry about them every single night. She is in second grade. She is a great student, well liked, and doing so well in school. We are still taking lots of supplements for mitochondrial support.

She still gets the occasional sparkly limb. She has taken up sleep walking since the Keppra wean. That happens a few times per week. The other morning she wakes and tells me 40 min after wake up that she felt shaky for a while after waking (but she ate, read and talked to me during that time and I noticed NOTHING). So….we still have some ‘stuff’ happening which for most parents would not be very alarming at all but for us it keeps those seizures in the forefront of our mind.

We keep all the families out there struggling w/ BRE in our thoughts and prayers. It is a very scary disorder.
THANKS for reading!

Two years off Keppra, 4 years seizure free

Ella was taken off Keppra in July 2012, after being seizure free the entire time on meds. She is doing great. Her night time ‘weirdness’ has decreased to almost nothing. When I ask her she says she still gets her sparkly arm occasionally but she doesn’t call out to us anymore for help. Her sleep walking which started after we weaned off meds only occurs if there is some stress or she didnt sleep well the night before. We are still very very strict about bedtime, routine, diet, supplements and we rarely (if ever) let her stay up late or get less sleep. Academically she is doing super and loves school. She has an awesome memory and loves playing piano and running track. So happy BRE is behind us…..we hope it is behind us forever.