lost my beautiful daughter Katie.

[katiekate]

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 Sudden Unexplained Death in Epilepsy. 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

[tinasmom]

Roben -

I am so very sorry for your loss. My daughter was 24 and died in her sleep. She had aspirated during a seizure. I have read many comments and articles about not taking a bath if you have seizures. It is safer to take a shower and no washcloths as they can plug the drain. I actually made an appointment with our pediatrician to explain the autoposy to us. He said that she probably had seized for about 15 minutes. After talking with him and learning about Sudden Unexplained Death in Epilepsy, I called the coroner and requested that her cause of death be amended to read Sudden Unexplained Death in Epilepsy. I told her that it was important to me that her death be added to the statistics (not that I wanted her to be just another statistic) so the numbers could be accurate. God helped me through all of this by turning my depression and anger into a passion to help others with E. I actually have more videos about events related to E on the Internet. I have a You Tube (lpeck59) and My Space (http://www.myspace.com/angelswatchingus). I miss her everyday and I know that she is in heaven watching over us. I have a saying that I learned in our grief group that I share with others: I"I put my hand in your hand so you know that you are not alone."

[Bernard]

Hi Roben, welcome to the forum.

Condolences on your loss.

[BuckeyeFan]

I can't even imagine the pain you endure everyday. My heart and prayers will be with you now and in the future. I have three adult daughters and can not imagine life without one of them. My oldest grandchild just turned 9 and I will give her an extra hug (she already gets lots of them) this weekend with your daughter in mind.

May God give you plenty of good memories to cherish.

I had my first seizure at age 20 in the bath. My wife heard me and saved my life. She would save it again several years later.

Maybe directing your emotion into the positve like Tinasmom has done could help you through these tough times.

[Meetz1064]

You bring such tears to my eyes. None of my family is blessed with E, except for me. But I wish I could give you a great big hug.

I cannot even imagine losing one of my children--although I have come close twice.

But you need to take some time to heal...and find a way to deal with your grief. And help Brant to do so as well. Please talk to a grief counselor, or your pastor, or someone along that line to help you.

Then, as you begin to heal, take your passion, like Laura has, and become an advocate for E. You would be a perfect advocate for E. It will help you to focus on something, and to heal...

(((HUGS))))

Meetz

[Georgiagirl88]

Hi Roben,

I am so sorry about your precious Katie. I can only imagine your pain and sadness. Nothing can compare to the loss of a child. May God Bless you and your family and I am sure your little girl is an angel in heaven! I hope we can all be a source of support for you and be here for you whenever you need us.
It has been wonderful for me.

Prayers for you and your family,
Michelle

[Cint]

Roben,

My heart goes out to you. I cannot say I understand what you've gone through, I can only imagine what it feels like to lose a child. Please remember that you did the best you knew at the time of the accident, so give yourself a break. But now that you know more, you can educate others.

My sincere condolences to you.

Cindy

[Belinda5000]

Roben,
welcome to the site.
I'm so sorry for your loss and I can't imagine what it was like for you to lose a child.

I was dx'd with epilepsy when I was two.

I never heard not to take a bath un supervised till I was an adult.

My husband has heard me go down bust plenty of times.

Belinda

[RobinN]

Roben,
This has been one of my greatest fears, when my daughter was first diagnosed at the age of 14. Another young girl the same age had just lost her life the same way.
My daughter wants her privacy, yet I can't help but listen each minute she is bathing.

I am so sorry for your loss. I am also sorry her brother has that burden as well.
Her memory will warn many other young people about this danger.

[dfwtexas]

God Bless you and your family. You are very brave for taking up this cause to help other parents, I am sure Katie is proud of you.

[brain]

You have my deepest sympathies!

[katiekate]

Thank you all so very much for your responses. I have to say it has been awhile since I have written in a forum about my little Katie. I still have so many bad days without her. I wish I could tell everyone to get second opinions, don't always trust one doctor. I worked with a man and his daughter had the same doctor that Katie did. He could not get his daughters seizures under control. She was having several seizures daily. Also the doctor said she had no brain damage to cause the seizures. He changed doctors upon my suggestion, and they found she had some specific disease and they ended up doing brain surgery on her, and removed the area where the seizures were coming from. She is doing wonderful now and seizure free. I am so glad that he took my advice to change doctors and got another opinion. I wish that I would of gotten another opinion! Please do not always trust your doctor. I cannot bring my Katie back, but hopefully I can help someone else by posting ideas in the forum.

Again thank you all for replying to my post it is so nice to meet you all

Roben

[marshlakemom]

(((( HUGS COMING YOUR WAY))))

Thanks for sharing your heartbreaking story. You must forgive yourself and move on.....

There is no other loss like the loss of a child in my opinion.

Lots of hugs and good wishes coming your way.

Deb

[hazey]

Im sending you hugs. I just can not imagine your pain. I have two beautiful daughters so I have half an idea as to what you are feeling. I also know that words are a comfort, and to know that you have support from others.

Take care of you. xx

Hazey xx

[darkmarkshark]

wow that's horrible. I can't believe they wouldn't have said something about baths, but then I know of a women who was told her son could take swimming lessons while he was being investigated for possible seizures. He had one in the water but the instructor was right there


I was given a stern warning about not being allowed to take any baths and to never lock the bathroom. I was still a bit out of it at the time though and was thinking "why is she telling me not to take baths when I only have a shower and not a tub?"

[ashmstng]

(((((Sending alot of hugs!)))))
Hello Roben~
Welcome to the board. I am so sorry to hear about your loss. My heart goes to you and your family. I am sure she is proud of you. Take care.

[alivenwell]

Your story is incredibly sad and moving. I send my support and sympathy to you and your son.

[jazz'smum]

My Deepest sympathy to you.

[angel]

Hugs,
Lorrie

[speber]

....but I have a beautiful daughter named Katie who will turn 10 in january and your story absolutely floored me.

Everyone says she is 'just like me'. I developed my epilepsy at age 8....she hasn't shown it yet and I pray it never gets her.

I honestly don't know how I would proceed in your case. Please be strong for her brother too as I'm sure he is being hard on himself (even if he doesn't let you see it).

Your friends here at CWE are wishing you, Brant, and Katie only the best.
Speber