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6 year old in induced coma for over 20 days seizures all tests negative - frustrating experience
Sat, 12/16/2006 - 00:14Hi all,
I am new here.
My cousin's son is 6 years old and he is in the Children's hospital of Philadelphia.
He had fever (103), stomach ache and head ache for 3 days and then the day after thanks giving in the early morning hours he had a seizure in his sleep. Parents found out at about 7am. He was air lifted to the hospital.
Dr. think that some virus got into his brain. He was getting sever seizures.
He was given all kinds of med to control the seizures. Initially seizures were coming from the right side of the brain (90% of it). MRI showed brain damage and Dr. don't know if that is due to virus or seizures. All known virus and bacteria tests came negative. So Dr. still don't know what it is and if it is gone. Seizures might be an effect of the damage caused by virus or bacteria.
Dr. consider brain surgery to remove the seizure point in the right side of the brain. Suddenly they noticed that seizures were coming from all over the brain and so surgery idea was dropped.
They started reducing Pentabarbetol from 6.5 down to 1. He was seizure free for about 30-40 hours but then started again. They eventually removed pentabarbetol but couldn't remove isoprofen completely. He is at 1.2 level on that.
Dr. Also did bowel movement as the stomach was becoming BIG and hard.
Now about 20 days have passed but Dr. couldn't control the seizures and the child is still unconcious.
Dr. wants to try Ketonic diet now or called ketogenic I think.
I couldn't find any such type of pediatric seizure + induced coma case so far on the net.
If any parents have gone through similar (close not necessarily exact) experience then please share with us. It would provide some comfort and also what to expect going forward.
Thank you in advance.
-Neil
Comments
Re: 6 year old in induced coma for over 20 days + seizures + all
Submitted by angel_lts on Sun, 2006-12-17 - 12:13
Oh I am so sorry to hear your news. It must be horrible for his parents.
I am not a parent, but have been through alot with epilepsy. Had it for a very long time. I have been through all kinds of brain surgeries, VNS, ketogenic diet, vitamins, omega three...
Here is info from my group.
Locations in the U.S. for the Ketogenic Diet
http://www.stanford.edu/group/ketodiet/ketocenters.html
Charlie Foundation
http://www.charliefoundation.org/
Ketogenic Diet
What to do and expect?
http://www.webmd.com/hw/epilepsy/aa138104.asp Ketogenic Diet
http://www.neuro.jhmi.edu/Epilepsy/keto.html
The diet is a high fat, low carb diet. It works great. I was an adult when I went on it. Took away many seizures for the time I was on it. But that is only because my brain is fully developed, your cousins child is not.
It is a very strict diet. You weigh everything. Eating and going off of the diet can cause a seizure. So you have to stick with it. The diet has helped out many children and many seizure free. Sometimes it does not work for each child, for everyone is different.
I hope he tries it. See our brain needs fat and less carbs. It will help him not to have the seizures, or at least not so many.
I will pray for him.
Lisa
Http://health.groups.yahoo.com/group/epilepsyapproach/
Re: Re: 6 year old in induced coma for over 20 days + seizures +
Submitted by Jennifer Adams on Wed, 2006-12-20 - 09:48
My son has epilepsy. We struggle through every day, I truly can sympothize with the family.
I would suggest that you all do as much research as possible. Seek a second opinion, another Dr. may have some insight.
I would warn you that the diet. It must be strickly followed & monitored. We have tried it and received not result. Remember though, every child responds differently to different treatments.
I would strongly encourage you & your family to seek outside support. I have been through similar times and although my family is extremely supportive, some days it was the volunteers at the hospitals that would bring a smile and a small sigh of relief.
We will pray for you & your family.
God Bless you!
Jennifer
Re: 6 year old in induced coma for over 20 days seizures
Submitted by thatgurlthatlife on Mon, 2012-10-01 - 22:46
Hi Neil, I was just wondering what happened with your niece? My 11 year old cousin is experiencing the exact same thing. The doctors have given up on finding a cure and he has been in a coma for almost 2 months now. Any information on what happened would be greatly appreciated.