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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Hi!
My name isPatricia and I have a little son that has intractable seizures. As you, I feel daily that I am not able to help him. He had surgery at Mayo in February 2017, but his spells didn’t end. Now he is taking Keppra and trileptal and the seizures are happening almost everyday. He needs another surgery... we are planning to go... but we are from Brazil and we don’t have any insurance, so it’s all paid by ourselves. We will have to go soon ... and I am really afraid of this new procedure.
He is not going to school, or playing anymore... everything is triggering the spells.
I hope your daughter be cured as my son.
With love
Patricia
Replies to "Hi! My name isPatricia and I have a little son that has intractable seizures. As you,..."
I feel your pain! My daughter has been through 2 surgeries and still has seizures. It’s just very frustrating but did see a big difference in quality of life after surgeries despite physical set backs. It was a hard decision but glad we did it while she was young. Good luck and I’m here if you need to vent! I hate seizures! So unpredictable!
Hi, @patrassi - how are you? How is your little son who was having seizures? Did he end up having another surgery?
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I hope the doctors are able to help your son! We are blessed Dj's aren't daily...1 a week at most but they are violent and leave her exhausted. It's incredibly hard to watch your child go through such traumatic sickness and not to have the answers, I just keep digging and looking hoping to find something to help her. We have insurance but the medical debt is overwhelming, but blessed to have something that does help a little.
I sure hope that you can find answers and help for your son!! Thank you for responding, it's comforting to having people that care. Much love
Dj's mom