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My daughters seizures

Mon, 03/13/2006 - 21:03
Hello, I am hoping that I can find some help with dealing with seizures for my daughter who is 8. This started last July when she had a grandmal in the middle of the night. She has had an eeg and mri and both came back normal. looking for other parents going thru the same thing that understand what I am going thru. Trying to find info is so hard. and dealing with this is even harder. We still don't have any answers as to what is causing the seizures. they are better since she started meds. she has not even had a partial for over a week. but still everytime my cell rings. I jump hoping it is not school calling. I would love any advice I can get. Tchaide05

Comments

Re: My daughters seizures

Submitted by jolieweng on Mon, 2006-03-13 - 21:30
My son's seizures started last May, and we are still processing the possibilities, so I understand! It sounds like she has both generalized and partial seizures, as does my son. We've been on three meds so far, and just as we thought that things were going well, we've had a cluster of partials for the past several days. Both his eeg and mri are normal, but that really doesn't mean anything. I have a friend, who as bizarre as it is, who has a son who is 4 now, but started having seizures at 3 1/2 in August (right after my 11 month old (now 21 months)started having them). His first eeg and mri were normal and even though he was having a lot of seizures, she wondered if she was somehow imagining it. When med after med didn't work, she finally got in to see the neuro and he did the extended study in the hospital. There he was able to catch and diagnose his seizures after a few days. He actually has MAE and has just started the ketogentic diet, which has significantly helped, but hasn't solved it yet. We go see the neruo in May, but we've had some metabolic panels done and he has elevated pyruvate, but nothing else significant. I feel your frustration in not having answers. I spend hours searching the web every night in hopes of finding new information that might shed light on my situation. While I don't have any information for you that you probably don't already have, you have my best wishes and hopes for sucess in finding your answers.

Re: My daughters seizures

Submitted by rootbeergirl16 on Mon, 2006-03-13 - 23:31
Hi my daughter is 9 and has had 5 Sz her over her whole life time she was Dx in october we are currently and slowly uping her meds to try to stave off any more Sz I have to say this is a strange new world we have entered. They think that stress is a major couse of her Sz who could imagine that much stress on a 9 year old. I to do the cringe game every time my phone rings while she is at school. I think after a period of time either you just get use to the walking on eggshells or you just learn to step real lightly. I know for myself I have found so much support and friendship here. I cant say that I have figured it out if anything I have at least come to reilize that we are not in it all alone. I hope you all find the answeres and some of the wonderful support here that has been given to me. Best Wishes to you and your wonderful child. Pam

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