Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Looking into a corpus collostomy ....

I am looking for anyone who has had a corpus collostomy. We are looking into this for my 2 year old son who has many drop seizures everyday. Any info would be greatly appreciated.

Comments

Update .....

We are having this surgery done on Feb 4th.  Anyone who has had it done, info on the outcome and recovery process would be appreciated.

How's Your Son Recovering After the Corpus Collostomy?

My name is Kim and we have an 8 year old son, AJ who has tried every drug out there, has a VNS (Vagal Nerve Stimulator) and is on the Ketogenic Diet (diet hight in fat/protein and low in carbohydrates). AJ is currently taking Keppra, Lamictal & Felbatol...his Neuro. wants to put him back on Dilantin this April if the VNS changes he made today don't give AJ improved seizure control.  This is the 2nd battery pack to his VNS...it was replaced June, 2007 and since then we've been trying to regain the seizure control we had 1 year prior to it failing.

AJ was diagnosed with epilepsy at 14 months and since then, has acquired every seizure type there is.  AJ's diagnoses are:  Lennox-Gastaut Syndrome (an uncontrolled mixed seizure disorder where there are long periods of time where the seizures appear to be under control and long periods of time where the patient is in status epilepticus no matter what treatment is given-which is where we've been, daily, since 12/24/07) mild ataxia Cerebral Palsey, Severe Mental Retardation (Global Developmental Delay), Sensory Integration Dysfunction (the brain's inability to process information sent by the senses) and hypotonia.

AJ has worn a helmet with faceshield since he's been 2 years old.  AJ is ambulatory (walks) and eats/drinks by mouth (no G-tube which always amazes people in the medical field who read his medical records).  AJ still wears diapers and is non-verbal.

Our son's Neurologist suggested this procedure to us about 4 years ago which I wasn't open to it at all (scared).  Now, 4 years later I'm more open to this possibility and was wondering if your son has had the procedure done and if so, what is his outcome and how is he recovering?

 We live in San Marcos, California.

Any information you can provide will be greatly appreciated.

Thank you and God's Blessings to you, your son and your entire family.

Warmly,

Kim Carpenter

Re: How's Your Son Recovering After the Corpus Collostomy?

My son is doing great after the surgery.  It has now been 120 days since we have had a seizure!!!!!  He is progressing developmentally and seems to be learning very well now.  We are now completely off the keppra and are decreasing the tranxene as we speak.  That will put us at only 1 seizure med the depakote.  The dr still said that there is a chance our seizures could come back but for us surgery was the best option.  If you have any other questions please feel free to email me at mommy2threenow@yahoo.com

 

Take care,

Michelle

Re: How's Your Son Recovering After the Corpus Collostomy?

Hi Kim. My name is Deborah. I was on the Epilepsy website researching corpus collostomy and ran across your story with your almost now 9 year old son. I hope that he is doing well. Your story was just about 2 years ago so my deepest apologies if that isn't the case. I too have a 9 year old daughter who's symptoms and medication and VNS history mirror your sons. We just had our 2nd VNS put in 2 weeks ago, the first one implanted 2 years ago. We too were presented with this surgery options and am curious if you proceeded with it. We are on 4 meds and worry that her body is teetering on organ failure because of the drugs. Any personal experience you are willing to share would be helpful and greatly appreciated.

God Bless,

Deborah

deb.johnson@cox.net

 California

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P