MRI, the wait is very frustrating

Keli - posted on 03/09/2010 ( 1 mom has responded )

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My 4 yr old was recently diagnosed with epilepsy. She had her first last fall then nothing for 4 months then 4 in one month. Doesn't make much sense of course. She has partial complex seizures secondarily generalized. Where when they generalize she falls to the ground in an arched position tonic posture and it is very scary. I am afraid she is going to get seriously injured. She had a normal eeg and yesterday went for her MRI. From what I understand the likelihood that any of this explains the reason is not in our favor. From my research most epilepsy is with no cause known. As much as I would hate to hear terrible news such as a tumor, many parts of me want a reason and a solution, so they will just go away and never be heard of again. Unrealistic I am aware..LOL however I am not sure I like the unknown reason either. It seems pretty much a lose/lose here if the reason is unknown then that means we have to live in wonder and anticipation of the next one. This is by far the scariest thing we have had to endure as a family ever. I am very thankful other than when it happens or directly after she has no real clue about it. We are supposed to have the results of the MRI back on Friday, so now we wait. Waiting for answers to questions that may not be possible to answer can really do something to your nerves and mind. I just want my baby girl to not have to worry about this. And starting at such a young age is very bothersome to me. I think I just needed to rant for a bit about it. Thanks for listening. Many prayers to all members of this circle.

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Tanya - posted on 03/10/2010

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I understand your concern. When my son went for his MRI at 4 months old, I was terrified. It turns out that the only thing wrong, was scabbing from a brain hemorrhage caused by trauma (which I don't remember) in utero. Nothing as scary as a tumor, nothing as frustrating as an unknown reason. My son's seizures were called tonic-clonic seizures - he would fall flat on the floor head first with no warning. However, he has been seizure free for the past three years (he's 8 now) even though there is still seizure activity going on. Hopefully that gives you some hope that they will eventually stop. I hope you find out the reason behind your daughter's seizures soon and that it isn't an unknown reason.