[tri-med] Re: frazzled ramblings

-----Original Message-----
From: Janet Leigh King <jlvking@xxxxxxxxxxxxxxxxxxx>
Sent: Jun 27, 2004 8:41 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] frazzled ramblings

Janet,

Mari does the gusher thing once in a while too.  We have yet to figure it out.
We just got a pump for her this week, but haven't started using it yet.  We're
going to use the pump during the day (50 ml per hour over 18 hours).  I'm
going to try to start tomorrow.  Mari's GI specialist felt is might be better 
for
her, since the digestive system slows down at night.  He told us that even kids
who've never thrown up may begin throwing up first thing in the morning after
being put on an overnight pump.

We still don't know why Mari pukes, but here are a few things I do feel
confident in with her pukings...

1)  She gushes if she hasn't pooped in a few days
2)  She pukes more when she's snotty (puking generates more snot too)
3)  Powdered formula makes her puke more often than the same formula
mixed from concentrate
4) Suctioning after her vomiting & beginning breathing treatments have kept
her from getting pneumonia
5) Sometimes we have to take her back from 8 ozs to 7 ozs or down to 6 ozs.
I don't know why....

I think Tracey said it...."it's not okay if your child throws up when she eats."
You are right to get in touch with her nutritionalist.  It's so hard to sort 
out.
We sat down with Mari's GI specialist & he listed out all the reasons that
a child might puke.  Then we listed how we can check that or if we'd already
checked it in Mari.  From that list, we decided what made sense to do next.
Our choices were to try the pump & a hypoallergenic formula (nutramagin).
He wants us to switch to Peptamen...but it takes a long time to switch Mari
from one thing to the next.  We have to begin a 25-75 mix, then a 50-50
mix....you get the idea.  We're adding Duocal & if we miss a feeding then
she'll puke the next feeding!

Janet...just hang in there!  I know it's so hard.  The whole puking thing
makes me feel like I'm going to lose my mind.

Chris, mama to Mari
Tipp City, OH
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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