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My daughter newly diagnosed with Epilepsy
Mon, 02/11/2019 - 14:08Topic: Share Your Story
Hi, I'm new to this forum. I am very happy to find a place where I can read your stories and feeling related as well as supported. My daughter is 9 and was diagnosed with Epilepsy last week after a whole year with unexplained fainting episodes. I am struggling how to cope with this new condition. I feel hugely anxious when she is at school. My head feels tingling when I imagine she has her episode at school. My heart pounding when my phone rings. I don't want to go anywhere because I 'm afraid it would happen. I don't want to talk to anyone because I don't think people can understand. I know that I have to stay strong and healthy so that I can take care of her, but I am really really exhausted.
Comments
Thanks Erin! Your words
Submitted by hopefulmama on Mon, 2019-02-18 - 17:11
Thanks Erin! Your words touched me. Lots of cuddles is a great suggestion/ reminder, because sometimes I was too busy asking her about all other things relating to the drug's side effects / episodes that we didn't have enough of cuddles. I even blamed myself that I probably didn't take care of her well enough when she was baby. Because I don't know why epilepsy happens. I will keep your words in mind. Besides, I will get her the bracelet, but I have to convince her to wear it. She tries not to let people know about it, even though both I and her teachers explained about it. She loves to read and books may help her to understand better. But too bad I haven't found any book about epilepsy. Thanks so much for your time and your supportive words!
Thank you for your input. I
Submitted by hopefulmama on Mon, 2019-02-18 - 17:24
Thank you for your input. I appreciate your time and your thought. Reading the replies from every one really help to calm me down. She has been on Lamictal for 10 days and will increase the doses in 4 days, and another increase in next 2 weeks. We are awaiting for MRI appointment and a second EEG (the first EEG showed normal). With lots of respect for you who stay strong and optimist. We had promised her years ago before this diagnose to take her to Amusement Park. Now I feel anxious and not sure how to talk her out of it, worrying if the rides might trigger the seizures. Can you share your experiences? Sincerely,
Thank you for your input. I
Submitted by hopefulmama on Mon, 2019-02-18 - 17:11
Thank you for your input. I appreciate your time and your thought. Reading the replies from every one really help to calm me down. She has been on Lamictal for 10 days and will increase the doses in 4 days, and another increase in next 2 weeks. We are awaiting for MRI appointment and a second EEG (the first EEG showed normal). With lots of respect for you who stay strong and optimist. We had promised her years ago before this diagnose to take her to Amusement Park. Now I feel anxious and not sure how to talk her out of it, worrying if the rides might trigger the seizures. Can you share your experiences? Sincerely,