ADVERTISEMENT

6 year old in induced coma for over 20 days seizures all tests negative - frustrating experience

Hi 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

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.

Re: 6 year old in induced coma for over 20 days + seizures + all

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 +

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: Re: Re: 6 year old in induced coma for over 20 days + seizur

Dear Lisa and Jennifer,

Thank you so much for your response. It meant a lot to me.
I am at the hospital now with the child. I flew here to NJ from TX for x'mas and also to help out.

As of today, Doctors are trying to reduce the Isoprofen. He is at 0.5 right now. Last time they tried to reduce it, the seizures started again so this time they are reducing at an interval of about 6 hours per 0.1. His vital signs are ok and stable for past 36 to 48 hours. Only one minor seizure in last 24 hours.

The diet has been started but Dr. are being careful as his Pancreas is weak. They are reducing Ketomin as well.

If anyone out there read this please share your experience and provide your inputs like how Lisa and Jennifer did. It means a lot to everyone involved.

Thank you.
Merry x'mas and happy new year to all.
God Bless.
-Neil

Re: 6 year old in induced coma for over 20 days + seizur

Hi Neil- I do not know if you are still reading this as you posted 2 years ago around this same time of year...I can only pray that you are. We have recently experienced a near IDENTICAL situation with our niece. She has now been hospitalized in a coma for over 2 months. The doctors said today that all options and treatments have been exhausted and there is nothing else they can do. She is in the Children's hospital of Philadelphia. Can you please tell me what ended up happening with your little relative? I would appreciate any information you can provide. God Bless you and Merry Christmas! 

Re: 6 year old in induced coma for over 20 days + seizur

I know it has been 2 years but I've just seen your post and would like to know what ended up happening with your neice??  I know of a child who is in the same situation right now and I'm heartsick.  Any information you can provide is greatly appreciated.  Thank you in advance.

Re: 6 year old in induced coma for over 20 days + seizures + all

Hi Neil,

I did read your comment a while ago, but was reluctant to respond, as it made me heartsick to read the story, and we were also going through challenges with my 2 1/2 year old with tonic clonic seizures at the same time. I did not think I could be of help.

If you read my blog you will see that my son had been going through clusters of tonic clonic seizures, and is having some trouble controlling them. I do not know how scary it would be to be the parents of this little one, but I can get close to knowing. I thank god every day that when the epilepsy started to "show" to us it was with clusters during the day time that we could see. The last cluster had my son with over-lapping seizures, and there is no doubt in my mind that had we not known about this and gotten to the hospital, something similar would have happened to him as your cousin's child.

So far my son has been put on Lamictal, and is seizing if we miss a dosage on the hour! We are still waiting for results of the MRI and Lumbar puncture, pray to god there will not be a disease. I wish that I had some more helpful things to tell you. All I can say is that no matter what the neurologist says to me I do notice that every time my little guy has an empty tummy and has sugar he seizes as well! I really do believe that diet can play a role in some people. We just were given the book on the K. diet, but I have not yet been able to read it.

We will pray for your family and your little precious relative. I hope to hear that things turn around. Please let the parents know about this site, and that I am thinking about them every moment. Watching your baby go through something like this is the scariest reality anyone can ever face.

Best of love and well wishes,
Mama bear (Tresa)

Re: Re: 6 year old in induced coma for over 20 days + seizures +

Hi all,

Wanted to give this update:
I am at the hospital with the child. It is 36th day now.
He is on an unusual drug (Isoflorin). Doctors are trying to get him off that drug because he cannot leave life on that drug. So far when they move the drug down from 0.4 level he starts showing seizures.

An alternative to Isoflorin is suggested, which is Felbamate.
Felbamate has severe apaleptic anemea and liver failure side effects. Reading about it, we see that its usage has been minimal due to severe side effects possibility as well as not a good history of the drug as it is relatively new. (Introduced in 1993).

If anyone out there used FELBAMATE on the child and had good results, please share.

We need to make a decision if we should allow docs to use it or not.
It is hard to see your own child being a guinepig for a new drug.

Thanks in advance.
Happy new year to all.
God Bless.
Neil

Re: Re: Re: 6 year old in induced coma for over 20 days + seizur

Hi Neil,
I have not heard of this drug. Sorry to hear that you are having to deal with this. I do feel that you need to find a way to get this child stabilized. This is a scary time for the parents. My heart is constantly going out to you. Try not to think too much about what lies ahead, take it day by day. It is hard to see a child being a guinepig for a drug. My child is also on 2 newer drugs as of today. The moment the newer drug hit him today he laid on the floor and his eyes went to half mast. We can only do our best. Keep reading, keep asking. Try to form a team with your doctors so you can all find the best solution. I feel that sick in the pit of your stomach we have that here too.

Keep going, good luck, I will pray for you.
mama bear (Tresa)

Re: Re: Re: 6 year old in induced coma for over 20 days + seizur

Neil

I was on Felbatal brand name for Felbamate as an adult. I only have bad news about this drug. I am sure they have started him on this drug already. I was not on it long, sick on it. I also heard that their have been a few deaths on this drug too.

Hope he is doing better these days

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: 6 year old in induced coma for over 20 days + seizures + all

HI NEIL AND FAMILY!!
PLEASE KEEP US UPDATED ON R*** AS WE WILL ON OUR LITTLE MIRACLE, AS YOU KNOW WE CAME HOME THE OTHER DAY, THANKS FOR ALL YOUR SUPPORT,PLEASE KEEP IN TOUCH.OH, AND I HAVE POSTED, THANKS AGAIN!!
TIFFANY