Tina

tinasmom

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My daughter, Tina was diagnosed with Epilepsy at the age of 6. Unfortunately, her seizures were never under control. All her neurologist would do was up dosages and add medications. I was very uneducated about Epilepsy at that time and would just agree with her doctor. Tina finally became seizure free on August 3, 2006. She died in her sleep from a seizure at the age of 24. My husband and I have adopted her daughter, Nicole. Nicole has recently been diagnosed with Epilepsy. I am now am very educated on Epilepsy and have dedicated my life to raising awareness and funds for this disorder. I feel that if I can help save one life, Tina's death will have a purpose.
 

RobinN

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Hello Tina's mom -
You have touched my heart with your post. I take a deep breath and say a prayer for you, Tina, and Nicole. I have only dealth with this disorder for a year and a half, so you are one of the heros.

Welcome... and I am very glad you have chosen to join us.
 

tinasmom

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I am glad to be here. I enjoy communicating with people that have Epilepsy. You're never too old to learn something new.
 
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Tinasmom
So very sorry for your loss. I was diagnosed about 2 weeks ago with epilepsy.
You and your husband and Nicole will be in my daily evening prayers. Glad you found this site. It has made me begin to feel like I'm not the only old man with this condition. Lot's of folks here that tell it like it is.
Take care,
Michael
 

speber

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So sorry I can't begin.....

....remind Nicole (and yourself) often that it doesn't mean it has to happen to her!

However long our lives may be...we must strive to live them fear free.

Hoping happiness will return to you all!
:rock:
 

Birdbomb

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Welcome tinasmom

I think I've met you on another forum...

So sorry for your loss. But you are a very brave and couragous person to adopt your grandchild and raise her. I can understand where you are coming from as I am raising my 2 grandaughters also.

We just lost Riva, (aka PositivePerson & Fourstar and a Moderator) last Friday due to epilepsy. When I was 19 my best friend also died from epilepsy. These people have touched our lives in ways we not be aware of and some, for years to come. As you already know education is the key. It's through their passings and the passings of others that we can teach people about Epilepsy.
 

Bernard

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Hi Tina's Mom, welcome to the forum. :hello:

I'm sure I've seen you posting on other E forums too, but I think this is the first time I have read your story.
 
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tinasmom

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Happy Birthday

:bday2:

Happy 26th Birthday Tina!

Love Always,
Mom, Keith, Deidre, Nicole, Brittany and Courtney
 

RobinN

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Happy Birthday to Tina and her family. May you all celebrate the wonderful memories you shared.
 

brain

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:bday2: Happy B'day Tina!
:e: :cake:
 

speber

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Happy Birthday Tina!....

:bday:
 

S-J Walsh

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I am sooooo sorry for your loss. My dtr is only 17 and was diagnosed when she was 11 and given med after med after med. Nothing has worked so far. I fear for her...I really do. I didn't realize that you could die from a seizure. Now I'm really scared because she has seizures at night in bed. Can you really die from that? or are there other issues involved. I'm scared. Please write me back. s-j
 

RobinN

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Hi S-J,
I haven't seen Tinas mom on for a while, but she might be coming by when I am not aware. I have linked a few threads and a page that might give you some more information about SUDEP. I was told by a neurologist that seizures were not life threatening. I happened to find out differently here. As with any disorder, you run the risk of complications. Unfortunately there are too many complications that occur with a seizure disorder, that we just are not in control of. I could be wrong but I do believe this is not common.

Don't be stressed out about it though or your daughter will feel guilty. You need to take care of yourself so that you can help her through the difficult times. There are times that you can control, such as she should never go swimming alone (unless someone is watching), and she shouldn't take a bath without being monitored. If my daughter were having active seizures at night, I might have a baby monitor in her room and a bell on the bed.

I do believe there are ways to keep our precious ones safer, but there is always a risk factor involved. Give her a hug.

http://professionals.epilepsy.com/page/hallway_sudep.html
http://www.coping-with-epilepsy.com/forums/f20/hello-1645/#post13484
http://www.coping-with-epilepsy.com/forums/f20/not-length-life-but-depth-life-1949/
 
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tinasmom

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My daughters seizures were not under control and she was taking a total of 23 pills a day. She had a neurologist that wouldn't listen to her. One of her seizures lasted for about 5 minutes and he told her that couldn't be true because she would've been dead. There are alot of factors that puts someone at risk of SUDEP. There are many people that have seizures and don't die from them. The Raise website deals with SUDEP and you can find some articles there on this subject.
 

S-J Walsh

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Thank you

Thank you Tina's Mom for responding to my post. What meds was your dtr on? And the fact that your dtr had a seizure that lasted 5 minutes is extreme cause for concern by her doctor. He/She must not have been very attentive to your dtr to actually say that to her. OMG. I was told by Arielle's neurologist that if she had a seizure that lasted more than 2 minutes to get her to Emergency. We have been there 4 times. I am sooo thankful that they have a "teaching" hospital here in Calgary, Alberta, Canada and they are extremely up to date on all the new procedures etc. They are extremely supportive and interactive with the families of patients. A very good network. How is your little one doing with her seizures? Is she on meds? My thoughts are with you and and you will be in my prayers. s-j
 

tinasmom

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Since my daughter lived on her own, I can't tell you what meds she was on at the end. I do know that she tried just about every AED and her seizures still were not controlled. I only went in the house after the coroner said that it was ok. I didn't even think of taking her pill bottles until it was too late. I know that the coroner was surprised to see all the meds that she was on. The neurologist here is not a good doctor, I know other people that have problems with him and he won't refer anyone for a second opinion. I'm glad that he is not a pediatric neurologist because I refuse to deal with him. As far as Nicole's seizures, we have not seen any since she started Lamictal. Although her behavior has escalated and we are going to a new pediatric Epileptologist this month because her doctor won't listen to us. We just ordered a video and audio baby monitor through Wal-Mart to make sure she is not have seizures at night.
 

skillefer

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Hi S-J!
Yes, you can die from having a seizure in bed. My hubby works nights, and he worries about it with me. So, I sleep with pillows propped on either side of me, while I lay on my side. The pillows only come up to the bottom of my ribcage. Hope this helps....
 

S-J Walsh

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I'm glad the lamactil is working

My dtr is on lamactil and just started a new add-on drug Topimax (not sure if that's spelled right). Poor little Nicole to have to go through this too. I can understand why you didn't even think about checking out the pill bottles. OMG, it must have been hard enough to deal with your dtr's death let alone think of anything else. My heart truly goes out to you. I worry about Arielle day and night. Poor kid. She's having a really hard time with the new add-on drug. She's sooooo tired all the time. We're doing the slow increase and she only just started them. She's in her final year of High School and she's on the graduation list and this is just an added stress. I try my best not to show how worried I am, but sometimes I just go in my bedroom and cry and pray. I feel your pain and heartbreak and I will still keep you in my prayers. You are a very strong woman and I look up to you for that. May God bless you s-j
 
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