My daughter’s journey with epilepsy

For several years now, readers of this blog have enjoyed weekly photos of my two kids playing in nature (I hope!). They are both very active and curious, and I delight in seeing them engaged in the world around them. What I have never mentioned before, however, is that my daughter Afton, turning three in August, has epilepsy.

Afton all hooked up for a video EEG at OHSU in Portland, OR.

Afton all hooked up for a video EEG at OHSU in Portland, OR.

She has struggled with seizures since she was 13 months old. You’d never have known this, but there are days that we don’t make it outside because she has had a seizure and it pretty much takes it out of her for the rest of the day. It’s hard to see her usually all-over-the-place self regulated to sleeping really hard following a seizure and then being mommy- or daddy-fied for the rest of the day.

We recently did a three night/four day video EEG at Doernbecher Children’s Hospital here in Portland to have a concrete diagnosis. Afton has intractable focal epilepsy with right mesial temporal sclerosis. She has frequent seizures that cannot be adequately controlled with medication and has scarring in her right hippocampus.  This type of epilepsy usually presents itself in teens or adults, not toddlers. Our plan to move forward involves exploring different surgical options at two different hospitals (OHSU and the Seattle Children’s Hospital).

My wife and I have set up a GoFundMe campaign to raise funds that will help cover the high expense of hospital stays and doctor visits, more tests like MRIs and EEGs, medicine, travel expenses, and loss of income while caring for our child.

We are determined to get Afton to a point where she can have a seizure-free childhood. We appreciate any help! Thank you.

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3 Responses to My daughter’s journey with epilepsy

  1. Lynn Takata says:

    I’m so sorry to hear this. Wishing all goes well with Afton’s procedures and that you will find some good options for helping her.

    Best, Lynn

    >

  2. cymerragreen says:

    Hi my name is cymerra and I have a two year old son that been having seizures since birth my son have flatlined 9times and then had 48 seizures since he been born and they don’t know where they are coming from so I can understand your pain and how you feel it so so hard to watch your child shake like a fish out of water you feel so hopeless but my heart goes out to you

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