← Return to Young adult daughter opposed to brain surgery

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@adoptivemother

Thank you. She has a counselor she has been working with for many years but she did not ask any questions at Mayo and rolled her eyes every time I did. They did not sit down and talk with her about pros/cons I think partially because they have not formally recommended surgery yet. That is what all of this testing for but it is pointing in that direction.

She has three types: absence, focal aware auras, and tonic/clonic grand mals. They are increasing in intensity as time goes on. During her auras in the past, she was able to communicate a bit but this last time she was completely unaware of anything around her. Inbetween the cluster, she was aware but could not speak. During the grand mals, her seizures typical and lasted 3-5 minutes. This last one was 40 minutes with two rescues and she was not conscious through much of it. She falls frequently and has broken bones, gotten a concussion, etc. She had a serious car accident when this all began. She does not care that her safety could be at risk because she hates her life and hopes one of these accidents "takes her out". 🙁 Recently, my visiting adult son asked her if she can go in hot tubs, implying the hot water might be a problem and we all laughed and then I said, "But she shouldn't go in alone." and she lost her mind and didn't speak to me for awhile. She asked how I expect her to live her life in fear of everyday circumstances. I had made the comment light heartedly and have never limited her usage of our hot tub.

Her personality has changed dramatically since the seizures began. It could be the Keppra, brain damage, severe depression, or a recently developed psychiatric disorder. It is impossible to know. But she was the easiest teenager and would never have spoken to me then the way she does now or been so oppositional.

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@adoptivemother
You really have your hands full and a real challenge on your hands. I really hope your daughter will open herself up to learning about her condition and getting the help/treatment she needs to help her regain some quality of life.

I can empathize with you and your worry. I had a very close family friend die at 38 due to a seizure at the top of a flight of stairs and positional asphyxiation at the bottom of the stairs. He lived alone with his dog. 😢 His seizures/epilepsy started after having a bad sinus infection that went to his brain and then caused an abscess that caused a stroke when he was 37. He was paralyzed on one half of his body and had to learn how to walk again. Unfortunately, he did not want to take his medication because it made it hard to work/drive because it made him so sleepy and was hard to function. He once fell while shopping in a store and had a seizure and fell face first and smashed his nose which required surgery. He refused to move to AZ (he was in FL at the time) to live with his parents to ensure he was safe. A sad ending to a young life.

I really hope someone can get through to your daughter to empower her to take control of her life and epilepsy so it doesn’t control her.