6 years old in coma for 35 days + seizures + all tests negative - help

[deallover]

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.

Seizure activity was from right brain but became prominent from all over the brain so brain surgery was ruled out.

He has been in the hospital (Pediatric ICU) for past 35 days and still in induced COMA. Since all tests are negative including three spinal taps, doctors don't know what kind of virus got into his brain and if virus is gone but the dmage it caused is still causing seizures.

Currently he is on Isoflorin and couple of other drugs.
Doctors want to remove Isoflorin but everytime they reduce it below 0.4 his seizure starts. Unless they remove Isoflorin his 3rd MRI is not possible. Aslo according to docs ISOFLORIN is something he cannot live life on so it has to come off.

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

[Boopers]

Oh Neil,

First, I would like to Welcome you to BT. I am so sorry about this poor little boy. It must be heartbreaking.
I don't know anything about the Felbamate but had to come on and lend emotional support.
I will pray for him and hope that there will be a good outcome.
Take care and please keep us updated.
May God be With You All,
Linda

[The Dude]

I will pray for him and his family straight away!!!

Welcome to Braintalk!!

http://img138.**********.us/img138/435/grouphugym7.gif

[RathyKay]

(((Hugs))) for your cousin's son and family. Seizures suck.

Pansy sent a link of your thread to Child Neurology (http://brain.hastypastry.net/forums/forumdisplay.php?f=115). You might want to cross-post over there as well as on the Epilepsy Forum (http://brain.hastypastry.net/forums/forumdisplay.php?f=144).

My son also has epilepsy. He's been on several different AEDs (anti-epileptic drugs), but not felbamate. (Is that the same as felbatol?) Currently, we've been able to do a pretty good job of controlling his seizures through diet. Anyway, back to felbamate... *all* of these AEDs have side effects, some worse than others. Liver side effects aren't uncommon; I'm not so sure about apaleptic anemea. On some of the drugs Tom took, he had regular blood tests to check for potential liver (and other) problems before they became serious. I'm assuming this is the case for felbamate... regular bloodwork.

Unfortunately, a lot of times, you end up trying several different drugs before you find something that works. Maybe the felbamate will be a temporary solution, so that he can be brought out of the coma, have that third MRI and start functioning again, and then switch to another AED. Tom was initially started on phenobarbitol (the oldest AED in the business) because it could be easily given intravenously. Once things were under control and his body was working again, we weaned him off.

Anyway, please try cross-posting on those other two forums. I think you'll get more response that way. Good luck, and more (((hugs))).

[Missyat]

My son was on felbatol/felbamate for over 1.5 years.

The aplastic anemia can happen but they can watch carefully and have blood tests... that is what they did with my son.

He did fine on it.

I did have to sign a report stating I knew that this could happen and that I would not sue the neuro??? that was not fun!!

But it helped with my son's tonic clonics.

Side effects for MY SON:

1. sleeplessness
2. lack of appetite

Remember, that if one thing works for my child may not for yours....

Our children may have the same dx... yet their seizures are very different.

Our neuro told us that if the child has other health impairments then aplastic anemia ''could'' happen, my son ''only'' has seizures so we gave it a try.

I hope I helped.

[Mom2Ava]

Hi there. My daughter also has epilepsy and we have found her in bed one morning not able to function ... she was in the middle of a prolonged seizure but she looked like she was in a catatonic state. These seizures are called status epilepticus.
I know there are some other parents that have been through the induced coma because of status. Perhaps you could head over to epilpesy.org
Here is a link to the parents helping parents forum:
http://www.epilepsyfoundation.org/efforums/forum/categories.cfm?catid=2

[deallover]

Hi,
Thanks to everyone who replied and prayed for us.
We really appreciate it.

I am not sure how to cross reference this post in other forums.
Can someone please let me know?

Thanks.
Neil

[RathyKay]

Just copy what you wrote here and click on one of the links I posted above (either Child Neuro or Epilepsy). It will take you to the forum. Click on New Thread and paste your info there. Or, just click on the forum link, select New Thread, and retype everything from scratch. I think you'll get more response if you retype everything in each forum, as opposed to directing everyone here. Make sense?

A lot of us type duplicate posts in several different forums to reach different people. The Child Neuro folks tend to cross-post on the cerebral palsy forum, or hydrocephaly forum, or autism forum, or epilepsy or... you get the idea. Whichever best fits your situation.

[deallover]

Thanks Kathy.
I have posted this in Child Neuro.
I have also posted this on www.efa.org/ecommunities/parents helping parents forum.