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Help-our down syndrome son is scheduled for surgery
Fri, 01/14/2011 - 08:50Our son is 37 years old and down syndrome. He has had seizures since he was 21 years old. Medications are not working,he has tried all. I mean all!! He is schedule for a corpus colostomy at Emory on Jan 26th. My husband and I have had to make this decision for him. We are scared to death.. The doctors at Emory are informative but not very caring. Are we doing the right thing??Can anyone help us on our decision. He is having 30 to 50+ seizures a month... They have him so much medication he can't function.. He is such a joy to us ...He is also on commundin for a blood clot disorder...Which is scaring us to death....Please someone help us and tell us some news bad or good if you have experienced this..
Thank you
James, Susan ,Sean
Re: Help-our down syndrome son is scheduled for surgery
Submitted by bella0809 on Sun, 2011-01-23 - 22:07
Hi Susan,
I have an article about the surgery posted on this site at http://my.epilepsy.com/epilepsy/journal/issue1/surgery
Postive comment? After 36 years of seizures and 4 meds that did not stop the seizures, I opted for surgery. I have been seizure-free since surgery, which was over 5 years ago. I am also med-free for almost a year now. It far outweighs all negative comments. The surgery was painful, but there are drugs to deal with that. I woke up when being wheeled out of the room & when I realized where I was and understood people who were speaking around me, I felt a great deal of relief. I have to make an effort to remember names, but since I've come off meds I find it much easier. I often think my memory problems were caused more by the side-effects of the meds than the seizures.
Hi Susan,
I have an article about the surgery posted on this site at http://my.epilepsy.com/epilepsy/journal/issue1/surgery
Postive comment? After 36 years of seizures and 4 meds that did not stop the seizures, I opted for surgery. I have been seizure-free since surgery, which was over 5 years ago. I am also med-free for almost a year now. It far outweighs all negative comments. The surgery was painful, but there are drugs to deal with that. I woke up when being wheeled out of the room & when I realized where I was and understood people who were speaking around me, I felt a great deal of relief. I have to make an effort to remember names, but since I've come off meds I find it much easier. I often think my memory problems were caused more by the side-effects of the meds than the seizures.