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Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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weedodger

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Hi All,
my name is Alex , my daughter has epilepsy,and is mentally handicapped , therefore is unable to tell us when a siezure is due ,there is so much I need to learn from all of you , she is 47 and has had the problem since birth , but we still are learning after all these years
thanking all of you for your future help
Alex
 
Hi weedodger, welcome to CWE!

I moved your post to "The Foyer" so that other members could see it and welcome you properly. I hope you feel free to ask anything, and to take advantage of the collective resources of the site. Members provide a lot of anecdotal advice, plus tons of support.

Best,
Nakamova
 
Welcome Alex! I am beginning this journey with my daughter also! Im am so glad to have found this site, the people are fantastic!
 
Welcome, Alex! Please make yourself comfortable. You are among friends! I am a mother to Paige, who has also been diagnosed with epilepsy.
 
Alex,
You have come to a wonderful place! I have had epilepsy for 40+ years. The good people here at CWE have helped me to understand what is going on with the side-effects of my epileptic brain and of the medicine I take. There is much to learn here and people are so very willing to share information. Welcome!
 
Hi LIsabee'
I know from my last 47 years of Dawn our daughter being diagnosed with epilepsy,we were a young married couple and didnt know what had hit us ,but over the years the years we have learned to live with it ,and accept it hard as it may have been,but poor wee Dawn was the loser,and to think it was the whooping cough injection the caused it all .

Lisbee ! what is your daughter called and how old is she ? how did it all begin , please if it is painful please say
Alex
 
Hi Dolores'
the questions I have to ask is , do you have any feeling that a seizure is about to happen , our daughter is unable to tell us ,but if we were able to see it coming we would be able to help her be in a safe position ?
Alex
 
Hi chop 456, thank you for your welcome and hope to be able to have a few discussions in the very near future
Alex
 
A Big Welcome to You!

Welcome,

You will find that you are among friends. Feel free to ask questions. You are sure to get a response. You are not alone. You are sure to find someone who is knowledgeable and willing to help.

I wish you well on your journey with your daughter.

Tom
 
weedodger said:
Hi Dolores'
the questions I have to ask is , do you have any feeling that a seizure is about to happen , our daughter is unable to tell us ,but if we were able to see it coming we would be able to help her be in a safe position ?
Alex
Click to expand...

I usually don't know when I'm going to have a seizure, I just go right into it with no warning. Also I don't even know that I've had it most of the time unless there is someone there to see it happen.

My husband however is pretty good at knowing when a seizure is coming on. He says that I have "That look". I don't know what "that look" is and I may feel ok but then a little later I'll have that seizure that he can tell I'm going to have.

Try to see if there's something that she might do or act in a certain way before she has a seizure. This might help you in gessing when she might be going to have one.
 
I never had advance warnings before my grand mal seizures. As one would begin, I could usually feel my eyes pulling to one side but I never had time to realize what was happening - I'd remember the eye movement when I came to. At that point I would remember and realize that "Damn it, I just had another seizure!"

That's why I find the seizure dogs so very interesting. They are aware of the subtle changes that occur when a person is going to have a seizure even if the person is not aware of them. They can alert the person so they can go to a safe place.

Hope your are able to find the answers and guidance you are searching for!
 
Hi Dolores
thank you for that run down , this is just about how we can tell with our daughter, sometimes it works other times it is about 24 hours later so we are on a red alert system, knowing that it is due but when?
Alex
 
New Member and so scared!

I joined this group with hopes that maybe someone out there can understand my fears and can give me any suggestion(s) to cope with them. My daughter (now age 27) was involved in a horrific car accident when she was 15. Besides broken femurs, and fractures all over her body, she had a traumatic brain injury. After several surgeries and years of rehap, I can say that now she is doing amazing. She learned to do everything all over again. Things that most people take for granted. She graduated college and is now a pre-school teacher. As of 2 months ago, she decided to move out of our family home to start her life living alone. Last weekend while she and I were out of state together, I woke up to her having a seizure. This is the 3rd one that she has had since her accident. This is the 1st one that I have ever witnessed. My problem now, as a mother, is coping with her safety living alone. I can honestly say that I'm more worried about it than she is. I lay in bed all night wondering to myself..."is she having a seizure right now? Alone?" I don't want to smother her with my own fears. But, I'm losing my mind with worry. Therefore, my question out there is....HOW DO I COPE WITH THIS FEAR????

Thank you to any one that can help me.
~Robin~
 
Hello, I'm Myca and my daughter is turning 7 months old and we still can't figure out whats causing her seizure. I am hoping to learn everything I need to do, so that I won't panic every time she has her attacks. And I hope there's someone out there who can help us figure whats causing here seizures and how to stop it. Because doctors here in UAE currently can't give us any information on how to cure it.
 
Hello Myca, I'm sorry to hear about your sweet baby's condition. When they're babies, and can't tell you how they feel, that in itself is hard to handle. I can only imagine your fears considering the doctors are not giving you the information needed to help. One thing you can 100% count on is she is 100% in your care. She is never alone. That is one possitive you can be thankful about. I know about the panic that you feel when she has an attack. You want to make it stop!!! You want to make it go away! After all, that's what a mother is supposed to do. Unfortunately, seizures are out of our control. Our's and their's. And I hate it!! I hope you can find the answers to your many concerns through your doctors...... or find another doctor! Knowledge is key!! Knowledge gives you a little bit of control.
Good luck to you and your sweet baby!
~Robin~
 
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