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susan57

Help-our down syndrome son is scheduled for surgery

Our 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

Comments

Re: Help-our down syndrome son is scheduled for surgery

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.

Re: Help-our down syndrome son is scheduled for surgery

Don't know about Emory. I had my surgery at NYU-Langone Med Center in NYC.  Dr. Werner Doyle is the surgeon for epilepsy.  He's been doing it for over a decade and does 100s a year.  Make sure you see a doc who is a specialist in the surgery your son needs.

Re: Help-our down syndrome son is scheduled for surgery

Thanks for your reply...OUr doctor is a specialist for adults and children. Would you mind sharing your story of your surgery with me? How did you feel when you woke up? Any negative or positive comments would be appreciated... Thank you!

Re: Help-our down syndrome son is scheduled for surgery

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.  

  

 

Re: Help-our down syndrome son is scheduled for surgery

Thank you for your comment,. I did contact John Hopkins. They will not see him,. Sean receives medicaid because he is uninsurable due to his mental retardation. They will not let us go out of State.  Emory is #13 on the list of top Neuro surgery teams., Very well known in Georgia...It's where everyone goes when they are very sick and can't be healed. Have  you had surgery?