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

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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