Anyone know anything about long lasting seizures in babies?

Stevie - posted on 07/29/2012 ( 1 mom has responded )




Hi, I just found this site and was hoping that someone had a similar story or knows something about my family's situation. When my daughter turn 9 months old, she had a seizure. It started in her left hand and then it went to her arms and her legs. We took her to the hospital, still seizing, they gave her Adivan and she didn't stop. They called another hospital to trasfer her because they don't have a neurologist. (Yeah, it's a really small town) We we're there from 5:00 a.m. to 9:30 a.m when they said they were going to fly her out. So we drove two hours to get to the other hospital to beat her there. They got her there around noon, the whole time she was still twitching. We still don't know how many seizures she had on the way over. When she got there, the PICU doctor came out and explained to us that she was still seizing and that they need to be stopped. She suggested a phentabarbatol (?) coma. We didn't like the idea, but we understood where she was coming from. So she was in the coma for a few days. When they tried to bring her out she started seizing once again. They tried all different types of medication, but eventually they had to put her back into the coma. This time they left her in it longer and brought her out slower. They also added Tompamax to the other four seizure medications she was on. Her seizures did stop that time. We still don't have any clue what has cause her seizures. Any suggestions would be appriciated. Once her seizure were maintained and she was off her sedation medicine, they tried to extubate her. She failed, the whole time she was on the machine she out breathed it. The doctor said they were no reason for her to fail. So she brought in an ENT doctor to run a scope down her throat. He found two callus like cysts on her throat causing it hard for her to breath. They didn't want to have to put a trach in so they transfered her to where we're at now. It took them a week before they could come get her. However, once we got here they scheldued to run another scope. Once they did, they found nothing but some scarring that the clipped away. They extubated her and she's having a rough time. Her oxygen flow is on high and they have to put in a trumpet once again. She's also having a hard time with her secretions, but she's only be extubated three days. Needless to say we've been in the hospital for over a month. If anyone knows anything about these long lasting seizure, it would be so helpful. Thank you ♥


1 Comment

View replies by

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms