My son

Kaeli - posted on 03/26/2010 ( 3 moms have responded )

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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.

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Kaeli - posted on 03/29/2010

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Thank you both so much. I appreciate your advice. I just want what's best for Skyler. :D

And no he hasnt had blood work done. We just moved to Virginia, and his old neuro is to far away and doesnt take his insurance so we just got him into this one. And I am already looking for better doctors. Ive read reviews on this one and havent found a good one yet. I just want whats best for my son. And I checked for side effects of Keppra but twitching isnt on there, though they said that if the dosage isnt right it could be seizure too. I am going to look into getting those test done to. Im a new young mom, and this is all so new to me. I just want Skyler to grow up healthy and happy.

Cindy - posted on 03/27/2010

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Aside from the sleep study i would ask for an MRI to rule out hydrocephalus maybe or have a brain wave test be done. To see if his brain if fireing off anything abnormal. So sorry to hear about your son. I myself have a daughter who has cerebral palsy and epilepsy and was born with hydrocephalus and requires 2 shunts to drain excess fluid from around her brain. I hope i helped some. I also feel for your concern it took a few nerosurgeons for me and neurologists to find the best care for her. Maybe ask for the chief of pediatric neurology for answers. Hope things work out. Good luck

Heather - posted on 03/27/2010

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first, I can tell you that the 2 neuros my son has had have both said Jacob has to be seizure free for 2 yrs before they'll consider removing his meds. As for the twitching, check the list of side effects for keppra. My son's on it too, but I can't remember if that's a side effect.

second, has he had any bloodwork done to check thr med lvls in his system? Haas his dosage been adjusted recently, or at all? seizure meds are usually based on weight, and if he's had a growth spurt he might not be getting enough meds. he could be having breakthrough seizures, which, in my son's case, don't look anything like the first seizures he had before the meds. don't be arfaid to tell the dr you disagree with what he is saying and that you don't feel like he is taking your concerns seriously. if you're not comfortable addressing him directly, talk to the practice manager. it's hard to do at first, but we are you child's voices! it took me awhile to learn to speak up, but now i don't put up w anything i don't like! ( sorry about my punctuation, etc, but typing w 1 hand, Jacob's got my other one! lol!)

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