Coping With Epilepsy Matthew's Friends
Free Advertisement

Go Back   Epilepsy Forum > Our House > Riva's Memorial

LinkBack Thread Tools
Old 09-17-2008, 08:32 AM
New Here
Join Date: Sep 2008
Posts: 3
Thanks: 0
Thanked 1 Time in 1 Post

lost my beautiful daughter Katie.

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.


Last edited by Bernard; 09-18-2008 at 08:20 AM. Reason: split off from '2 candles for tina' thread
Reply With Quote
Old 09-18-2008, 05:04 AM
Esteemed Pillar of the Community
Join Date: Nov 2007
Location: Janesville, WI
Posts: 638
Thanks: 6
Thanked 4 Times in 4 Posts
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 ( 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."

Reply With Quote
Old 09-18-2008, 08:23 AM
Bernard's Avatar
Your Host
Recent Blog: Oh poop
Join Date: Mar 2005
Location: Friendswood, TX
Posts: 6,524
Thanks: 775
Thanked 2,298 Times in 820 Posts
Hi Roben, welcome to the forum.

Condolences on your loss.

New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

Would you like to help support this forum?
Reply With Quote
Old 09-18-2008, 08:39 AM
BuckeyeFan's Avatar
Super Moderator / Grandpa
Join Date: Feb 2008
Location: Ohio - Buckeye country
Posts: 1,907
Thanks: 13
Thanked 152 Times in 84 Posts

Roben, with all my heart.

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.
Reply With Quote
Old 09-18-2008, 08:57 AM
Meetz1064's Avatar
Super Moderator / Fantastico
Recent Blog: Kindness is
Join Date: Oct 2007
Posts: 3,777
Thanks: 103
Thanked 302 Times in 251 Posts

Oh, Roben.

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...


Reply With Quote
Old 09-18-2008, 11:29 AM
Esteemed Pillar of the Community
Join Date: Dec 2007
Posts: 584
Thanks: 0
Thanked 0 Times in 0 Posts
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,
Reply With Quote
Old 09-18-2008, 11:50 AM
Cint's Avatar
CWE Supporter
Join Date: May 2008
Location: Denver, CO
Posts: 5,507
Thanks: 1,153
Thanked 3,165 Times in 2,056 Posts

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.

"The Golden Rule is that there are no golden rules."
~George Bernard Shaw
Reply With Quote
Old 09-18-2008, 11:54 AM
Belinda5000's Avatar
Account Closed
Join Date: Sep 2007
Location: Georgia
Posts: 2,241
Thanks: 429
Thanked 596 Times in 474 Posts


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.

Reply With Quote
Old 09-18-2008, 01:36 PM
RobinN's Avatar
Super Moderator / Super Mom
Join Date: Aug 2007
Location: SoCA
Posts: 7,836
Thanks: 181
Thanked 733 Times in 554 Posts
Send a message via Yahoo to RobinN
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.

Neurofeedback - Rebecca's Story

Robin's Challenge

Knowledge is power and knowledge shared is power multiplied.
-- Bob Noyce
Reply With Quote
Old 09-18-2008, 02:54 PM
dfwtexas's Avatar
Esteemed Pillar of the Community
Join Date: Jun 2008
Location: Rowlett, Texas
Posts: 980
Thanks: 34
Thanked 60 Times in 57 Posts
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.
Reply With Quote
Old 09-18-2008, 11:29 PM
Account Closed
Join Date: Feb 2007
Location: Tampa Bay Region, FL
Posts: 3,452
Thanks: 28
Thanked 19 Times in 14 Posts


You have my deepest sympathies!

Reply With Quote
Old 09-19-2008, 12:35 PM
New Here
Join Date: Sep 2008
Posts: 3
Thanks: 0
Thanked 1 Time in 1 Post
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

Reply With Quote
The Following User Says Thank You to katiekate For This Useful Post:
Jay1 (07-08-2015)
Old 09-19-2008, 01:47 PM
marshlakemom's Avatar
Joined the Party
Join Date: Aug 2008
Location: Northern Canada
Posts: 36
Thanks: 0
Thanked 1 Time in 1 Post

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.

Reply With Quote
The Following User Says Thank You to marshlakemom For This Useful Post:
EC77 (01-03-2014)
Old 09-23-2008, 04:37 AM
New Here
Join Date: Sep 2008
Posts: 3
Thanks: 0
Thanked 0 Times in 0 Posts

Sending you hugs

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
Reply With Quote
Old 09-23-2008, 05:15 AM
Weaving the Community Fabric
Join Date: Aug 2008
Posts: 200
Thanks: 0
Thanked 11 Times in 5 Posts
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?"
Reply With Quote
Old 09-23-2008, 02:33 PM
ashmstng's Avatar
Weaving the Community Fabric
Join Date: Apr 2008
Location: Florida
Posts: 274
Thanks: 9
Thanked 6 Times in 2 Posts

(((((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.
"Do what makes you Happy, Be with who makes you Smile, Laugh as much as you Breath & Love as Long as you Live."
Reply With Quote
Old 09-23-2008, 10:57 PM
Venerable Voice of CWE
Join Date: Dec 2007
Location: PA.
Posts: 1,601
Thanks: 266
Thanked 149 Times in 122 Posts
Your story is incredibly sad and moving. I send my support and sympathy to you and your son.
Reply With Quote
Old 09-24-2008, 02:00 AM
jazz'smum's Avatar
Weaving the Community Fabric
Join Date: Jun 2008
Location: NSW Australia
Posts: 180
Thanks: 0
Thanked 0 Times in 0 Posts
My Deepest sympathy to you.

Last edited by jazz'smum; 09-24-2008 at 02:02 AM. Reason: picture
Reply With Quote
Old 09-24-2008, 10:47 AM
angel's Avatar
Esteemed Pillar of the Community
Join Date: Sep 2007
Location: Oregon
Posts: 760
Thanks: 0
Thanked 19 Times in 8 Posts

Reply With Quote
Old 09-24-2008, 12:22 PM
Recent Blog: Lots of giggin'!...
Join Date: Sep 2007
Location: Austin, TX
Posts: 1,329
Thanks: 10
Thanked 33 Times in 29 Posts

Unhappy Roben I can't express my thoughts on your loss....

....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.
Reply With Quote

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On

Similar Threads
Thread Thread Starter Forum Replies Last Post
Feeling lost Joe The Kitchen 12 02-21-2008 07:43 AM
A beautiful blonde pole dancer.... TeeTees The Lounge 3 11-17-2007 10:21 AM
My beautiful girl has a 'shadow' mimi's mum The Kitchen 2 10-01-2007 06:31 PM
lost without braintalk annie The Foyer 6 08-01-2006 05:54 PM

All times are GMT -5. The time now is 04:38 PM.

Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.