Our 11 year old son Jacob has been diagnosed with medically intractable epilepsy. (Complex Partials) He has been having seizures for about three years and is now 11 years old. We have been on three different medications starting with Lamical, Trileptal and now a Keppra /Dilantin combo without sucess.

I opened my son Ian’s book bag, and I felt like someone punched me in the gut.  I was overcome with conflicting emotions of happiness and devastation – all due to a worksheet he completed at school about the word: Danger.

He was so proud to show me the worksheet and explain that danger meant, “It can hurt me”.  I replied by saying, “Ian, did you know what ‘danger’ meant before Mrs. C taught you?”  He just replied – “danger means it can hurt me”. 

A few weeks ago I ran a survey of my members, which total near 700 and I was surprised by the answer to the following question:  What question do you have, but rarely ask (no matter the reason why)?

My son was diagnosed with Gaustaut Syndrome this year and I was told he can not be helped. I want to talk to other moms with children with gaustaut syndrome and also anyone who has help on how to start organization for funding.

Thanks and good luck with your loved ones with epilepsy.

Shanae

Hi everyone.

My name is julie.

I have an 11 year old daughter. She had her first seizure when she was 5. It was what they call a grand mal seizure. Her hand and legs were drawn and her eyes were rolled back in her head. I had never seen a seizure and this being my first and only child, I panicked, I thought my baby was dying!!!

When we got her to the ER, she had a small fever (100.5) so they said it probally was a febrile seizure and that she would probally never have another one. They did a cat scan and found nothing.

I am a mother of an almost two year old boy, Austin.  He has had seizures for a full year now. My husband, son and I live in Port Moody, B.C. Austin started with simple partial seizures but once he went on Tegretol he developed myoclonic seizures which he has between 100-200 a day. We are on his fifth medication now but are remaining hopeful because we are being referred to a neurologist who leads the ketogenic diet at Children's Hospital.

Well Megan was born on June 1, 2006. She was a happy and heathly baby. She was an easy baby and laughed all the time, 2am in the morning too. At 4 to 5 months Megan was rolling over, at 6 months she wasn't rolling or sitting up, at 8 months she was hositpalized for RSV with peumonia, this is when life took a turn for the worse.

Megan still wasn't sitting or rolling and 9 months Megan started having over 100 of seziues day. We had one neurologist that was doing much for her seziures and another one that said they weren't sezures.

Hi Everyone,

I'm Natalie from Australia, I live with my partner & our 2 daughters in country NSW.  5 hours away from the Children's Hospital wear our peadiatrician practice's from.

My eldest daughter Taylor is now 4.5 years old & has been diagnosed with Epilespy since she was 12 weeks old.