Mom of 3 year old with seizures

[chw4o]

Hi. I'm on several, maybe a lot, of forums that I use to help me understand what my son is going through. (complex partial, g-tube, epilepsy) Right now I am so upset about his epilepsy that I had a dream last night that he died at school from a seizure. We just moved and we're between doctors. We reached the year mark and they are still uncontrolled. They are: partial, nocturnal, monthly, short and relieved by diastat but not decreased by current meds. I know there are a lot scarier things out there but to me it is what it is. So I am here to see if I can get a few additional people to share some knowledge. I hope it's a helpful place.

[Nakamova]

Hi chw4o, welcome to CWE!

I hope you feel free to explore the different forums here, and to post any questions. CWE members are a great source of support and empathy.

Best,
Nakamova

[Paorrin]

Welcome it is scary. But you are not alone. There is a wealth of info on this forum. There are alot of people who probably have been in your shoes as well. It has taken 7 years to get my daughters seizures better controled. We are now 2 weeks seizure free.... She went the last two years with seizures daily. Four months ago she was having clusters of 20-30 an hour!!!! Its about finding the correct med combo. Right now its felbatol, depakote, and klonopin. My daughter is 11yo and has atonic, complex partial, and absent seizures. Feel free to ask any question or lean on a shoulder or two. I have had that same dream too in the past....it is very scary.

Robert father to Abigail 11yo Lennox-Gastaut Syndrome, SBH