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 Hospitalwear our peadiatricianpractice’s from.
My eldest daughter Taylor is now 4.5 years old & has been diagnosed with Epilespy since she was 12 weeks old.
I noticed that she was doing stomach crunch-like movements when she was a bub & thought that she was constipated, so I took her to the chemist & they saw her do these crunch’s and advised me that it wasn’t normal for babies to do these & to take her straight to the emergency.Which we did.
We had to wait until she did another episode & they then flew us to the Children’s Hospital in Sydney.They then advised us that it could be a tumor on the brain & had an MRI done.This is when we were told that she had epilepsy.
Was very scary, but she has been on med’s her whole like, but they have never been under control.
She now has had behaviour & learning disorders since she was 1.5 years and has always been slow in her developmental milestones. She is now more like a 2 year old than the 4 year old that she is. She goes to daycare full time (as I work full-time) & we have been given funding for a special ed carer for her to have whilst there.She also has been attending early intervention since she was 3 (took us 2 years to get into it) & is now at an Early Intervention Support Class (like a special pre-school) at out local school.
Because her seizures can fluctuate with frequency ranging from 2 weeks without one then having 4 weeks with her having 1-3 episodes each 2-3 days, her development has detiorated very quickly. She was fully toilet trained 2 months ago & now we are back to the start with her.She has ADHD like symptons, with very little focus & concentration levels, she gets very frustrated that she cannot do things & talk like to other kids in her class & is always scared to go to sleep.
The seizures are most likely to occur when she is either going to sleep, sleeping or waking & it is the front left-side of the brain that is affected. We had an MRI done about 2 months ago which found that the brain is still isolated & hasn’t grown or spread to other parts, making her an ideal canidate for surgery!
I am now waiting on our Prof to decide whether to increase one of her med’s or to have the surgery. Due to the developmental issues I am hoping to have the surgery. Therefore, I would be really interested to find out about other’s experiences & possible surgery outcomes/side-affects.
Cheers, Nat
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