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Infant with "seizures"
Tue, 12/21/2004 - 15:48Hi, My name is Erika, and I have a now 2 month old baby girl that has been having seizures since even before she was born. I used to bring it up to the ob that she felt almost spastic in utero and he just brushed it off. When she was born she still continued to have these "seizures". I brought it up to the pediatrician twice before we left the hospital. She also brushed it off and said that it was probably just an imature nervous system. It was a week later that I returned to the doc with her for a 1 week discharge check up. I then brought it up again and her doc then took warrant to what I was saying and admitted her into the NICU. After a week in the NICU and a round of phenobarbatol (which did make the seizures stop for about 2 days), 2 EEGs, a cat scan, MRI, 3 Spinal taps and a ton of blood work, they still found nothing. The neorologist did get to see one of her "seizures" and said that they were definately seizures untill she looked at the eeg and said that apparently it wasn't. I dont know what to do. I feel like I am going through this alone. I cant even leave her with anyone because they are so nervous around her. She has good days and bad days still. Some days she will "seize" close to 40 times times ranging from 30 secs to sometimes 10 min. Other days she will not have any episodes. I am scared to death and do not know who to talk to or where to turn any more as the doctors are saying that they will just "watch" her progress. She is such a good baby and she is just beautiful. I am so scared of loosing her because I have no clue what to do with her. If any one has any suggestions or has been through anything similar or knows of any good resources for me please respond or email me at tammarrasmom@yahoo.com as soon as possible. Thank you, Erika(Mom), Destinee (Baby) and family.
Comments
RE: Infant with "seizures"
Submitted by tammarrasmom on Mon, 2004-11-01 - 20:58
Thank you for your input. Believe it or not the neurologist that she sees is a pediatric neurologist that specializes in epilepsy in youngsters and she is the only one in our area. She is out of Gillette childrens hospital. The hardest thing for me is that I have been telling them that something didnt feel right since I was about 5 mos. pregnant. They told me at the NICU that it had never been heard of before. I just think that most people who have experienced the same thing have probably not had as many children as I have (Destinee makes 5) and so probably did not know what felt "normal" and what didnt. I just wish I had more options then what I do have. Because I also feel that she should be looked at. I have heard horror stories about babies not being diagnosed early enough and either dying or haveing permanant brain problems or even delayed development and so on. I really wish that there were others out there going through the same things as me so that maybe I could understand a little better. Do so many other parents go through docs disbelieving them when I believe a parent knows their child better then anyone or at least they should so why do the "high end specialists" just brush these issues off as if they were nothing. She does not even have to go back to the neurologist until December 10th, 2004. For all I know she could be permanately disabled (which I hope wont happen) by then. But thanks again for the web sites I am going to check them out righ now. Erika and Destinee
Thank you for your input. Believe it or not the neurologist that she sees is a pediatric neurologist that specializes in epilepsy in youngsters and she is the only one in our area. She is out of Gillette childrens hospital. The hardest thing for me is that I have been telling them that something didnt feel right since I was about 5 mos. pregnant. They told me at the NICU that it had never been heard of before. I just think that most people who have experienced the same thing have probably not had as many children as I have (Destinee makes 5) and so probably did not know what felt "normal" and what didnt. I just wish I had more options then what I do have. Because I also feel that she should be looked at. I have heard horror stories about babies not being diagnosed early enough and either dying or haveing permanant brain problems or even delayed development and so on. I really wish that there were others out there going through the same things as me so that maybe I could understand a little better. Do so many other parents go through docs disbelieving them when I believe a parent knows their child better then anyone or at least they should so why do the "high end specialists" just brush these issues off as if they were nothing. She does not even have to go back to the neurologist until December 10th, 2004. For all I know she could be permanately disabled (which I hope wont happen) by then. But thanks again for the web sites I am going to check them out righ now. Erika and Destinee
RE: Infant with "seizures"
Submitted by tibet2 on Mon, 2004-11-01 - 18:10
((((erika))))i'm so sorry to hear about destinee's problems. i would contact the epilepsy foundation nearest you and see what help they can give. they vary quite a bit, hopefully you live near one that can help. do you have choices in your health plan? i strongly urge you to get a new neurologist - and push to be referred to a pediatric epileptologist (neurologist who specializes in epilepsy. it would be best if he/she specializes in children). there are many childhood epilepsy syndromes where early and proper care is critical. and in any case, all seizures ought to be treated. this site has a lot of great information about epilepsy. this is another great link for parents : http://home.earthlink.net/~mchee1/episynd.htmlhttp://www.neuro.wustl.edu/epilepsy/pediatric/little destinee needs to be treated....... and someone needs to take you seriously!