Looking for someone dealing with premie epilepsy, chiari malformation

My 4-year-old daughter was born 8 weeks premature. Recently, she was diagnosed with generalized epilepsy with focal seizures with altered awareness.

In addition, they found that she has chiari type 1 malformation, a cyst on the brain that they're monitoring, and a frontal lobe injury from birth.

Being new to the epilepsy diagnosis, we're going a little crazy. I'm hoping there are some families out there with similar stories who might be able to offer some tips. One thing we're doing is getting some video monitors around her house -- at the suggestion of our doctor -- so we can monitor her when she's sleeping or playing in another room. They told us she needs to be monitored closely.

As for the other three issues (not the epilepsy), doctors are monitoring those.

It's a little overwhelming having this all come out at once, so hopefully someone might be able to offer some tips.

 

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