[tri-med] Re: I need advice on seizures ....

Logan had them but not any longer.  At 5 lbs he was on 3 cc's of phenobarb 
twice a day.  Once we got the infection under control he stopped having them.  
The best thing as others suggested is the blood levels.  1 cc doesn't sound 
like very much.  Also I would suggest have a neuro. Dr. check her.  I made them 
come in to look at Logan and evaluate him when he was in the hospital.  They 
did the eeg and didn't find activity on him.  However in infants it is very 
tough because the brain produces abnormal activity from what I was told.  I 
would have them check her for the oxygen like Karen suggested.  See if they can 
admit her for a day or two to run all the checks she needs and have them watch 
the seizures.  Good luck and please don't hesitate to ask for more help.  Tina
 Christine Nugent wrote:
Hello,

I am new to this list. I am the mom of a 2 month old
little girl with full T-18. The doctor's told us she
would last 1 week. We have been home with Hospice
support for 1 month. Grace's seizures and
accompanying apnea have increased over the last 2
weeks. I need advice on how some of you have managed
seizures with your kids. My pediatrician is trying
phenobarbital (orally) at 1cc right now. We went to
get the blood levels checked today. It seems as if
the seizures are increasing. I think she needs more
pheno. The Hospice doctor told me that sometimes at
the "end of life" these seizures increase. We have
gotten used to the little ones, the longer ones are
the hardest to watch. She sometimes will be out of it
for 20-30 minutes. The doctor also said we could go
to the hospital -but I don't know if that is best. 
Especially if she dies. We really want to keep her at
home. We are not getting much sleep and are wondering
what to do. Any advice would be so appreciated.

Chris - Huntington, NY
Mommy to Anne 7 yrs, Kathleen 5 yrs,
and Grace 2 months T-18

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