So the nurse calls to tell me the results... Well they found nothing. Most people might be happy that all looks okay but I am not cause I really wanted an answer. Also my poor Tyson had 2 seizures last night. We were doing so good. 10 days without one and then we get 2 in one night. So I am back to not sleeping again so I can watch Tyson. I am still waiting on a call from Tyson's personal nuse so I can tell her what happened last night. The thing is on the outside Tyson looks so normal and is quite advanced for a 4 year old. To a stranger you would have no clue he has epilepsy. As much frustration as I feel I just keep remembering the other kids we seen at the hospital on Monday. Kids who were confined to wheelchairs fron epilepsy and I guess I have to be thankfull that Tyson is not like that. I just keep wondering will he have this now for life? What if he can't get his DL? What is going to happen next year when school starts? I guess I just have to take it one day at a time. Thanks girls for all of your support.
So sorry you didn't get any answers. Poor Tyson and poor mommy and daddy to have to watch and worry. I hope you guys figure something out.
two more last night! that is so dissapointing. of course it is good and bad that they didn't find anything. it is so hard to get a diagnosis on things like this. the doctor's never see it happen. this might sound crazy, but do you think it might help to videotape an episode and show the doctor? i hope you don't think that's a terrible suggestion, my intentions are pure.
Just remember that although there are really bad examples, there are also plenty of good examples. I have a good friend now who has to take meds all the time, but she functions pretty normal overall. Hang in there! Hopefully the answers will come soon.
I'm sorry you are struggling so with this. (((((BIG HUGS))))) to you, Tyson, and the whole family. Taking it one day at a time is all you can do ... let the rest come in its own time.
As an aside ... I have epilepsy and you'd never know it. I'm active and have a family. I work and drive and all that jazz. Like everything in life (it seems) there are variations. And so much depends on age - my seizures today are very different from the gran mal seizures I had as a kid.
Hang in there and feel free to drop me a line (my email is email@example.com) if ever you need to chat. I won't claim to be an expert, but chances are, I've at least been there, done that.
How frustrating. I swear having no answers is worse than answers in so many ways. I wish they had some answers for you.
Like I have said to you before, hang in there and be strong. I can not imagine how this must be to live through.
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That stinks that they didn't find anything ... but it's good at the same time. Anyhow, I know that epilepsy can be controlled to some degree with meds, so I hope you're able to get good help from your doctor with that. And poor Tyson with two seizures last night!
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Oh and Joan that is a great idea. I am going to charge my camera. This will be hard to do and I might not make it through doing it but I sure am going to try. I guess for now my only option is more meds so I hope that works.
So sorry Tia. Bless his little heart.
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I can only answer for myself on the pain part (I have only known one other person w/ epilepsy - my great grandfather and he passed away many years ago) ... but the answer is no, I do not feel pain from the seizures (unless I hit something in the process or fall into something). What I do feel afterwards is muscle fatigue - like I had a big workout at the gym.
Again (((BIG HUGS))). I know this is scary. But I'm walking, talking proof that the meds can make a huge difference.
Hang in there mommy.