Kaeli - posted on 03/26/2010 ( 3 moms have responded )
My son is now one years old, when he was born the doctor fractured his skull when using the vacuum. He was having seizures on just his left side, and it kept getting worse. He was careflighted when he was a day old, and had over a hundred seizures during the flight. He spent 2 wks in the NICU. His first neurologist put him on Kepra and it has stopped his seizures. He was out of my care for two months and was taken off his medicine by his peditrician, not his neurologist. And around October of last year, when he was 7 months old, I noticed he was having his seizures again. His neurologist put him back on his medicine, and he has been doing alright since. But he has recently started twitching. It started on just his left side, but has progressed to his right side. It happens more when he is sleeping or sleepy. I am worried. Could this mean he is getting worse?
His new neurologist, which we saw a few weeks ago, thinks he doesn't need his medicine because he has been progressing well and is a very smart one year old. He doesn't seem to care about my worries of his twitching, and just thinks it is a voluntary thing that happens. He also said everyone twitches in their sleep. We have to go to a sleep study this coming up week, and he says if he doesn't see anything he wants to take Skyler, my son, off his medicine. Should I be concerned about this? I don't want to take the chance for the doctor to take him off when I think he still needs it. And I am concerned about his twitching. Some nights it can get really bad, but he doesnt really do it during the day. Could this be another type of seizure? I've asked his new neurologist all of this, but he seems to treat me like a new mother that just worries to much. Can anyone help with some advice here? I just want what's best for my son.