[tri-med] Re: Philina Update

Kelly,

>cherry cola and red hots get me every time!

Can't help you on the red hots, haven't found any kind of cinnamon sugar
free
candy, though most other flavors are out there.  But the cherry cola IS
definitely available in diet.

>i have a question. i am not familiar with any type of tube feeding so this
>might be really obvious, but i just don't get it. why did her tube site
open
>back up after having juice?

Nope, not obvious at all!!!  Philina's the 1st kiddo that I can point to and
say it's happened to with any certainty.  (And the only place it's been
documented, even for her, is right here.)  My gut wants to say that it has
something to do with it's acid content, or maybe what it does when mixed
with her stomach acid, but that's only a working hypothesis.  And so far, I
haven't felt inclined to want to recreate the situation for verification
that it would happen again to her.

Now why I'm so sure that it is related, is that her g-tube got oopsed out in
mid June at respite camp.  Site dried up fast to my amazement, and we had no
leaks, unlike the last time it was out for months.  But when we went to
Denver in late July, she was drinking OJ at breakfast every morning, and
suddenly I was having to cover her leaky tube site again with dressings.
When we got back from conference and the family reunion, she stopped
drinking juice, and her site was soon dry again.  Not that I noticed any
correlation at the time though, I was just counting my blessing that it was.
She had her blood work in late August, and her physical in early Sept, and
we got the borderline diabetes dx, so I officially took her totally off of
all juice.  G-tube site reminded dry that whole time.  I did buy the lite
juices to send to camp with her in Sept., but they said that she refused to
drink any, and just drank water the whole weekend.  Her site remained dry.
So I just left the bag of assorted single serv juices in the back of my car
for her next camp.  There was no camp in Oct this year, because the director
got married, and there's never a Nov or Dec camp.  So we had no more leaks
until we ran low on diet coke and I dug out that single serv bottle of lite
cran grape juice for her lunch at program last week.  And I might add no
more leaks since that day either, as it dried right back up when she stopped
drinking juice again.  It's pretty compelling data so far!

Fawna, Research coordinator TRIS Project, mom
to Thom & Rhonda, Lara, & Philina 25yrs (PT6p
& Moya Moya Syndrome), Escondido, CA USA
http://home.mindspring.com/~fawna33/

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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