• Changing lives one seizure response dog at a time

  • International Epilepsy Awareness – Day Four

    Kaia

    My name is Amy and I have an 8 year old daughter, Kaia. Kaia started having seizures when she was 1 year old. She was diagnosed with abnormal juvenile absence seizures when she was about 2. At the time she was having around 40 seizures a day. Like many other families we have gone through many medications, different combinations, different doses, with no success. She had a Vagus nerve stimulator implanted in her chest when she was 4. It sends electrical impulses to her brain all day long. This also has no effect on the seizures at all. She is not eligible to have any other type brain surgery.

    Because we haven’t found anything to reduce or control the seizures, each year the amount of seizures increases. At age 5 she was having 250 seizures a day. She just turned 8 and is having around 500 seizures a day now. That is over 180,000 seizures a year. The seizures are short lasting only a few seconds each so she can usually recover quickly and continue her acitivities. The last year has been different though.

    Around March last year Kaia would have difficulty waking up. She would sleep for over 12 hours and would wake up but was unable to walk or talk. These days became more and more frequent. After a 24 hour video EEG it was determined that she was having status seizures. Instead of waking up each morning her brain will begin seizing. She will go into a 4-6 hour status seizure each morning. She will be in a comatose type state for hours at a time until something triggers her brain to come out of it. The neurologist is not sure how or why this is happening. It is difficult to make plans or to do anything because I don’t know if she is going to wake up in the morning or seize for 24 hours.
    She did well in preschool thru first grade. She is now in second grade but is only able to attend a few hours a day because of the seizures.

    At this point I feel that we are just waiting for an answer and hoping that answer comes soon. I am so thankful to have friends on Facebook that can relate to what is going on. It is nice to have people to talk to that can actually relate to what is going on and offer advise.