What is Epilepsy Seizures
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. The condition is named from the Greek epileps...
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My little nephew
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Hello all.
I am new to this group and I have never done things like this before. I am desperate to find some kind of answers or feed back. Maybe some one has experienced the same thing. My nephew (Godson) is only 6 years old, He is having uncontrolled seizures for the past 9 months and no one can tell us why. He has a number of neurologist and all they do is feed him one medicine after another. He is currently on 4 different kinds and NONE are working. His MRI, CAT Scan, EEG and blood work came back NORMAL!!!!! How can that be? The poor thing is constantly shaking and is disoriented. The seizures are now brief. He has about 10-15 a day. He grunts, his eyes roll back and his head jerks back. Before all the meds he was having several a day lasting over 10 minutes. The only thing the doctors are saying is be patient. That is ridiculous! As you can see I am very frustrated and angry and really want some kind of feed back from anyone. PLEASE HELP!!! Posted on 10/15/09, 12:10 am |
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Find a new neurologist and find one who specializes in pediatrics. NOW!!!!! The meds aren't working. Whatever you do make sure you tell them everything and don't be afraid to speak out. There is a special mri they can run its called a spec (not sure if im spelling it right). They run it on people with dementia and alsheimers. It really gets specific on where there is problems in the brain.
Good luck and my prayers are with your nephew. Don't give up I didnt and I have been seizure free for one month now. I was having them about 3 or 4 a day for almost two weeks. 
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Hi,
I feel your frustration. I have certainly been in the same boat for my son. For a long while all the neurologist seemed to do was increase his meds until he was so tired he would fall asleep in a second. My sons MRI and ct scan are normal but his EEGS are not. At lease not until recently. It did take alot of time and patience to wait out the increases until we got control of the seizures. He was diagnosed at 5 and for the last 16 months he has been seizure free. There is hope. By the way, he is almost 9 now
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Thanks so much for the responses it really helps. I do have to correct one of my statements....the EEGs were the only thing NOT normal. I have hope and will continue to pray for the best. I am very happy to hear that both or your situations have turned for the better. I love to hear positive. Mabou, do you mind telling me what type of seizures your son was having and what medication he is currently on? Like I said my nephew is on 4 and the poor little think is not right, he really isn't.
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My son takes different kinds of seizures. They started as simple partial but progressed to other kinds, I'm not even sure what kind. Sometimes he will drop unconscious for about 30-45 seconds with his eyes rolled back and his hands opening and closing. He is on clobazam and valproic acid(depokote). They seem to work pretty good for him. He does occasionally has break through seizures but because they grow so quickly they usually need increases.
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Thanks everyone!!!! You have all been very helpful. I am going to tell my sister. They have a docotors appoinment at UCLA next week. That is what is SO frustrading. He is being seen by many doctors that specialize in children. And NOTHING!!!! He is being seen as urgent case at UCLA Medical Center and all they do is feed him more meds.
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I just got news from my sister and it is not good. The doctors had the audacity to tell her that they are pleased with the outcome of my nephew and the situation is not going to get much better. These are side effects of the meds and she is going to have to deal with it. That she needs to deal with a child that has special needs. That at least he is not having the large seizures anymore....Yet in the meantime my nephew's principal and teacher called my sister to tell her that he is showing intense deterioration. He now can NOT open his lunch box or even open a baggie. He is tripping while he walks and can't run. He was a completely normal child up until 9 months ago. What is wrong with these people? And these doctors are happy with this outcome??? They have him so drugged up that he is losing himself! How can this be?
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I would tell your sister that if she feels he is too drugged, to insist he has to be taken down little of his meds. My sons coordination is not good either but not that bad. Its like my son does not have depth perception. If there are steps or a curb, he will often trip on it. Its scary.
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