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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 Addibaby on Fri, 2011-01-14 - 20:41
I don't know much about your sons condition, however I would suggest doing research and contacting the John Hopkins Institute. They are known for their work with epilepsy. I am not sure if they work on adults but it is worth looking into or they can maybe make some suggestions as to what to do.