My daughter Kiley, will be 2 in September, has been dealing with epileptic seizures since this past December. She was officially diagnosed with epilepsy in February. She is now on a twice daily medication to help control them, which in the last month we have had to increase the dosage twice.
In the past 6 months she has had at least 20 seizures. Anywhere from 2 minutes long to almost 10 minutes long. Typically when she has them she gets into a cycle where she has multiple throughout the day.
In the Past 48 hours she has had 5 seizures. Fortunately we have been able to avoid going to the hospital, she is home today, with no seizures in almost 24 hours. Been sleeping all day though.
So far she has had to spend 6 nights in the hospital, 2 ambulance rides, and 1 helicopter ride.
I've never been more scared of anything than the first time I saw her have a seizure and being told she has to be put on a breathing machine and life-flighted to downtown Houston. I've been really rather quiet about the whole situation, because most people I try not to worry other folks about my "our family" issues. But it is definitely starting to takes its toll... Between the complete unknown of how long or bad this condition can be for her, the HUGE medical bills that insurance won't cover, taking days off from work to be with her at the hospital, you name it... it's pretty dang stressful. (sorry, just a little bit of venting)
Her doctors at Texas Children's take good care of her when she is there, but unfortunately no one can give us much information on what causes these seizures. Just when we think we know what might trigger them, like being ill, she has one out of the blue while perfectly healthy. Which for that matter, other than these seizures she is a really healthy baby, and for that I am thankful. Just wish we could get this mess under control. Anyone dealt with this before? I know every situation is different, but good information can anyone share?
For those who have met my daughter, knows she is a handful. she has tons of energy and usually really playful and full of smiles. It sucks to see her hurt.
I was able to record a video of her during one of her seizures yesterday, it's hard to watch, but it's what she has to deal with.
[ame="http://www.youtube.com/watch?v=e_kPQzQyV0Q"]May 30, 2017 - YouTube[/ame]
Anyways for those of you that have some knowledge on this situation any info or reassurance you can give me I would appreciate. If nothing a simple prayer would be appreciated.
In the past 6 months she has had at least 20 seizures. Anywhere from 2 minutes long to almost 10 minutes long. Typically when she has them she gets into a cycle where she has multiple throughout the day.
In the Past 48 hours she has had 5 seizures. Fortunately we have been able to avoid going to the hospital, she is home today, with no seizures in almost 24 hours. Been sleeping all day though.
So far she has had to spend 6 nights in the hospital, 2 ambulance rides, and 1 helicopter ride.
I've never been more scared of anything than the first time I saw her have a seizure and being told she has to be put on a breathing machine and life-flighted to downtown Houston. I've been really rather quiet about the whole situation, because most people I try not to worry other folks about my "our family" issues. But it is definitely starting to takes its toll... Between the complete unknown of how long or bad this condition can be for her, the HUGE medical bills that insurance won't cover, taking days off from work to be with her at the hospital, you name it... it's pretty dang stressful. (sorry, just a little bit of venting)
Her doctors at Texas Children's take good care of her when she is there, but unfortunately no one can give us much information on what causes these seizures. Just when we think we know what might trigger them, like being ill, she has one out of the blue while perfectly healthy. Which for that matter, other than these seizures she is a really healthy baby, and for that I am thankful. Just wish we could get this mess under control. Anyone dealt with this before? I know every situation is different, but good information can anyone share?
For those who have met my daughter, knows she is a handful. she has tons of energy and usually really playful and full of smiles. It sucks to see her hurt.
I was able to record a video of her during one of her seizures yesterday, it's hard to watch, but it's what she has to deal with.
[ame="http://www.youtube.com/watch?v=e_kPQzQyV0Q"]May 30, 2017 - YouTube[/ame]
Anyways for those of you that have some knowledge on this situation any info or reassurance you can give me I would appreciate. If nothing a simple prayer would be appreciated.
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