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Hemispherectomy
Mon, 02/21/2005 - 20:03I am the nanny of a 9 year old little boy who had a anotomical hemispherectomy just over 3 weeks ago. He has been very sick since the surgery. His temp goes up to 103 or higher every day. He can hardly talk. He is in constant pain on the right side of his body, which is paralized. He can't walk. I just feel so horrible for him that his life has been reduced to this. He was have 15-100 grand mal seizures a day before the surgery and was in status epilepticus when the doctors finally said we had to do the surgery now or we would lose him. He's had a VNS, a temporal lobectomy and was on 16 different meds (phelbatol, phenobarb., ativan, diastat, trileptol, lamectol, prednisone,etc.) After the surgery he is seizure free. I am just wondering if anyone has any knowledge of what to expect. None of the Doctors or nurses can tell us anything. Will he walk? Talk? Re-gain vision? Will he be Spenser again? Anyone have any experiance in this? Thanks
Comments
RE: Hemispherectomy
Submitted by abbymom on Sun, 2005-02-20 - 05:53
My three year old had a functional hemi on the right side on January 24th of this year. He will walk and talk again. It will take some doing though because his hemi was on the left. I know that in older kids the process is longer, and the left hemi tends to be more involved.
He will probably walk with a limp, not be able to use his fingers, but be able to move his arm, and will not get back the vision, but with OT, PT and speech therapy for our daughter we see improvement everyday. In 4 weeks she can sit up by herself, scoot across the floor on her bottom, turn over onto her sides, use her shoulder to move her arm, and moves her left leg quite well - although she still isn't walking. You don't mention therapy, so I hope he is getting it.
My daughter had a functional hemispherectomy, so part of the right brain was left in there, but we were told to call immediately if there was any vomiting, fever, headaches, altered behavior etc. The concern is for hydracephalous and they want us watching in case she needs a shunt from excess pressure. I don't know if that is an issue with an anatomical hemi. Obviously I'm not a doctor, but your friend's child is in pain, and they need to find out why. I would question how much experience the doctors have with hemis, and get another opinion from someone with lots of experience.
My three year old had a functional hemi on the right side on January 24th of this year. He will walk and talk again. It will take some doing though because his hemi was on the left. I know that in older kids the process is longer, and the left hemi tends to be more involved.
He will probably walk with a limp, not be able to use his fingers, but be able to move his arm, and will not get back the vision, but with OT, PT and speech therapy for our daughter we see improvement everyday. In 4 weeks she can sit up by herself, scoot across the floor on her bottom, turn over onto her sides, use her shoulder to move her arm, and moves her left leg quite well - although she still isn't walking. You don't mention therapy, so I hope he is getting it.
My daughter had a functional hemispherectomy, so part of the right brain was left in there, but we were told to call immediately if there was any vomiting, fever, headaches, altered behavior etc. The concern is for hydracephalous and they want us watching in case she needs a shunt from excess pressure. I don't know if that is an issue with an anatomical hemi. Obviously I'm not a doctor, but your friend's child is in pain, and they need to find out why. I would question how much experience the doctors have with hemis, and get another opinion from someone with lots of experience.
RE: RE: Hemispherectomy
Submitted by spenserman on Mon, 2005-02-21 - 20:03
Thank you. Spenser is doing much better this week. According to the Drs...his fever is from his body trying to regulate his core temp. It's been normal for 4 days now, so we hope it's gone for good. Was your child in live-in rehab? No one can tell us how long he will be there, but there are children there in much better shape than him who are staying for 4-6 more months.?! Spenser also had the left side of his brain completely removed, so he is having much difficulty with speeking and is completlely paralized on the right side. His Drs. are Dr. Weinstine and Dr. Bruce at Childrens in DC. They are supposed to be the best on the East Coast. But now we are under the care of the rehab Doctors. He is doing much better this week and I am so encouraged. Thank you again for all the info.
Thank you. Spenser is doing much better this week. According to the Drs...his fever is from his body trying to regulate his core temp. It's been normal for 4 days now, so we hope it's gone for good. Was your child in live-in rehab? No one can tell us how long he will be there, but there are children there in much better shape than him who are staying for 4-6 more months.?! Spenser also had the left side of his brain completely removed, so he is having much difficulty with speeking and is completlely paralized on the right side. His Drs. are Dr. Weinstine and Dr. Bruce at Childrens in DC. They are supposed to be the best on the East Coast. But now we are under the care of the rehab Doctors. He is doing much better this week and I am so encouraged. Thank you again for all the info.
RE: Hemispherectomy
Submitted by jennamay on Mon, 2005-02-14 - 08:41
According to the most recent information, "despite the drastic nature of hemispherectomy, where half of the brain is removed, the surgery can be highly effective in stopping the seizures and preventing mental impairment. Children adjust to hemispherectomy remarkably well. After the surgery, most can walk and run, although with a limp. Hand function on the side opposite to the surgery is often significantly impaired and fine motor skills are not possible. Even when the language hemisphere is removed, children typically regain a considerable amount of language skills."
Below are links to information regarding hemispherectomy. I hope this is helpful.
http://www.epilepsy.com/epilepsy/hemispherectomy.html
http://www.epilepsy.com/stories/ps_1064000077.html
http://www.epilepsy.com/epilepsy/epilepsy_rasmussens.html
Best Wishes,
Epilepsy.com Editor
According to the most recent information, "despite the drastic nature of hemispherectomy, where half of the brain is removed, the surgery can be highly effective in stopping the seizures and preventing mental impairment. Children adjust to hemispherectomy remarkably well. After the surgery, most can walk and run, although with a limp. Hand function on the side opposite to the surgery is often significantly impaired and fine motor skills are not possible. Even when the language hemisphere is removed, children typically regain a considerable amount of language skills."
Below are links to information regarding hemispherectomy. I hope this is helpful.
http://www.epilepsy.com/epilepsy/hemispherectomy.html
http://www.epilepsy.com/stories/ps_1064000077.html
http://www.epilepsy.com/epilepsy/epilepsy_rasmussens.html
Best Wishes,
Epilepsy.com Editor