I lost my daughter Katie at 9 years old. I would love to put a video of her on here too. She started out at 9 months old having febrile seizures. At 3 years old she had a seizure that would last 2 1/2 hours and she had to be flown by helicopter to er. After her 3 day stay, they sent her home on phenobarbital. For the next 6 years she had about 20 or so seizures from fevers. Any spike in temp would cause a seizure. Her temp was not always a high fever.
In February of 2001 at 9 years old she had a pretty severe seizure. At that time I told her doctor that she probably needed another eeg and mri. He ran the tests and said that he seen epilepsy activity in her brain. Always just had seizures from fevers in the past. Had never had one without a fever. He changed her medicine from phenobarbital to carbitrol. I called him several times to let him know that she was not feeling well from the carbitrol she was taking. Waking up in the middle of the night feeling strange, dizzy. He decided to raise the dose. At this time I should of takin her to a new DOCTOR, but did not. Had convidence in him with his 30 years of experience. That was the beginning of April 2001.
On April 25th, she went to school and was fine that day. No fever, feeling great. She came home from school, and was outside catching caterpillars with her best friend. I had to go to the library to get her a book for a book report. She did not want to go with me. She stayed with her 16 year old brother Brant. Him and his friends were watching the hockey play offs on tv. He had Katie come inside to get ready for bed. She decided to take a bath, because she was itching from being in the woods. She was a tom boy, loved to be outside.
Right here I want to stop and WARN everyone, do not ever let your child take a bath unattended even if they seem fine and seizure free. DOCTOR never said anything about not letting her take a bath without supervision.
She had been on the new medicine for about 6 weeks. I came home from the library and her brother told me she was in the bathtub taking a bath. He had just checked on her about 10 minutes before I returned home.
I went into the bathroom to find my little girl laying on her back. She was not breathing. The rest I cannot even write about. She evidently had a seizure while in the bathtub or SUDEP. They could not explain what happened to her through her Autopsy. They said unexplained probable cause a Seizure. I felt guilty for not protecting her, being there with her, not getting a new doctor, not knowing to not let her take a bath. I hope that I can help someone else by joining this website and warn others that changing medication if very dangerous and to never take a bath unattended even if the seizures are under control. My Katie would be 18 years old now. Her Brother Brant and I are lost without her. My life is so empty without her. I miss her everyday. I know that she is here with me, but the pain will not go away. She was beautiful, and I can only now imagine what she would of looked like now and who she would of become.
Roben
In February of 2001 at 9 years old she had a pretty severe seizure. At that time I told her doctor that she probably needed another eeg and mri. He ran the tests and said that he seen epilepsy activity in her brain. Always just had seizures from fevers in the past. Had never had one without a fever. He changed her medicine from phenobarbital to carbitrol. I called him several times to let him know that she was not feeling well from the carbitrol she was taking. Waking up in the middle of the night feeling strange, dizzy. He decided to raise the dose. At this time I should of takin her to a new DOCTOR, but did not. Had convidence in him with his 30 years of experience. That was the beginning of April 2001.
On April 25th, she went to school and was fine that day. No fever, feeling great. She came home from school, and was outside catching caterpillars with her best friend. I had to go to the library to get her a book for a book report. She did not want to go with me. She stayed with her 16 year old brother Brant. Him and his friends were watching the hockey play offs on tv. He had Katie come inside to get ready for bed. She decided to take a bath, because she was itching from being in the woods. She was a tom boy, loved to be outside.
Right here I want to stop and WARN everyone, do not ever let your child take a bath unattended even if they seem fine and seizure free. DOCTOR never said anything about not letting her take a bath without supervision.
She had been on the new medicine for about 6 weeks. I came home from the library and her brother told me she was in the bathtub taking a bath. He had just checked on her about 10 minutes before I returned home.
I went into the bathroom to find my little girl laying on her back. She was not breathing. The rest I cannot even write about. She evidently had a seizure while in the bathtub or SUDEP. They could not explain what happened to her through her Autopsy. They said unexplained probable cause a Seizure. I felt guilty for not protecting her, being there with her, not getting a new doctor, not knowing to not let her take a bath. I hope that I can help someone else by joining this website and warn others that changing medication if very dangerous and to never take a bath unattended even if the seizures are under control. My Katie would be 18 years old now. Her Brother Brant and I are lost without her. My life is so empty without her. I miss her everyday. I know that she is here with me, but the pain will not go away. She was beautiful, and I can only now imagine what she would of looked like now and who she would of become.
Roben
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