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

Dear Chris,
  Welcome to the list. We lost our my little Grandson at birth  3 wks
ago, so I can't help with your question. You are all definatly in our
prayers for Grace's health. We have heard so many stories from the brave
parents and have the greatest respect for all of you. In all of our
contemplating of what our future would have been we were sure ready to
do anything possible for Kaden.
Love & Prayers going out to you.
LouAnn Bieck
York,NE
mom to Melissa, 24  mom in law to Trent, Grammy to Maelin Ann,2 &
Kaden James ^i^ 9/04/02 fullT-13 our Precious Angel.
also mom to Mick,28 & TJ ,14

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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