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

Sat, 12/16/2006 - 00:14
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 + all

Submitted by mama bear on Mon, 2006-12-25 - 22:48
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 +

Submitted by deallover on Fri, 2006-12-29 - 12:50
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

Submitted by mama bear on Fri, 2006-12-29 - 13:21
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)

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