[tri-med] Re: Seeking Help

You wrote she had half-digested chocolate Pediasure.  Do you think maybe
she might have trouble with chocolate?  I know when we used the
chocolate Elanor had diarrhea and extra spitting up when we used the
chocolate.  For us, it doesn't matter what flavor we give her--she has a
gtube (I actually wish they had an unflavored "unsugared-up" Pediasure).
Is there any difference with other flavors?

Jennifer, mom to Elanor-4!, full T18; and Arwen-6; caregiver to Joe-25
cerebral palsy & spastic dysplasia; wife to Andrew-32 and wonderful! 
Boise, Idaho USA


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Meierlaw
Sent: Sunday, January 25, 2004 2:00 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Seeking Help 

Hi, Jocelyn:

Thank you for your insight on the gagging.  We have actually tried
Nasonex
(recently) because Rachel seemed very snorty and the ENT thought it
might
help to dry her out. However, it just seemed to create drainage which
definitely causes the gagging to be worse.  We stopped using it, but
maybe
we should have given it a few more days.  I understand that it is one of
those drugs that can take a few days to get working properly.

This gagging and throwing up is a confounding problem.  When Rachel was
just
few moths old and I was trying to spoon feed her, it started.  At first
we
thought it was from the texture of the food (which was partly true at
the
time), then we realized it could be bowel related.  At that time, she
was
having constipation and could go several days without a bowel movement.
Our
pedi prescribed Miralax for the bowels and it helped immensely.  I
started
to call it "miracle-ax!"  Even so, the problem never went away.
Teething
began and Rachel would then gag herself from chewing her fingers.  She
won't
take anything to her mouth like toys or a teether - only her fingers.
Of
course, now and then she would gag herself on her fingers and throw up -
but
she isn't chewing her fingers anymore.  She is 33 months old now and her
teeth are in and her bowels are working regularly and she still gags and
throws up.  My husband and I feel quite certain that it is not a
behavioral
issue.  You just have to know Rachel and if you saw her when this was
happening you would understand.  Everyone who knows Rachel agrees that
it's
not behavioral.  It's not her style.  Moreover, it started when she was
very
young and babies of that age don't have the cognitive wherewithal to
manipulate in such a manner.  My husband and I think it is somehow 1/3
to
1/2 bowel related - possibly her intestines get all discombobulated and
flow
backwards for a while when she goes because of the hypotonia and the
weak
peristaltic action it causes.  We also think there is definitely a
correlation between her gagging and phlegm or drainage - that she just
can't
manage it in her throat because of her hypotonia.  In addition, she has
large tonsils that might be blocking or impeding the flow as she
swallows.
We have also considered Reflux and the possibility of a small Pyloric
Valve.
She is currently taking Prilosec just in case it's Reflux and the Upper
GI
we had a week ago showed that her anatomy (i.e. pyloric valve) is
normal, so
it can't be that either.

I guess some people can live with constant throwing up.  We can't.  Just
last week, while I was on the expressway driving her to an ENT
appointment,
she started gagging on phlegm (she has a cold) and she threw up all over
herself and the car seat.  I had to take her into the doctor's office
with a
coat covered with half digested chocolate PediaSure which also went down
her
neck and got on her outfit and into her onesie.  A few minutes ago, my
husband went to check her in bed since she just went down for a nap and
she
had thrown up in bed - it was in her hair and her eyes, as well.  We
cannot
go on like this and it causes Rachel to struggle so much - not to
mention
that she needs to keep her food down so she gets enough nutrition and
calories.  Furthermore, throwing up has to be burning her esophagus and
ruining her teeth - as if we don't already have enough problems!  The
tonsil
theory makes a lot of sense to us, but if anyone has any other
experience we
are open to your comments.  We don't want to have perfectly good tonsils
removed or put her through general anesthesia and a long recovery on a
theory.  If someone has another answer, we'll investgate it to be sure
first.

Thanks, Jocelyn, and to everyone for your suggestions.

Aimee in Cincinnati, Ohio (USA)
(wife of Bob; mother to Rachel 2-1/2  (T-18), Jillian 1-1/2 (our China
baby)
and Ian 6 months)

----- Original Message ----- 
From: "Jocelyn Knowd" <jknowd@xxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Friday, January 23, 2004 7:56 PM
Subject: [tri-med] Re: Seeking Help


> Dear Aimee,
>
> Welcome to the list. In our experience with our grand daughter Tess,
(who
> is almost seven) is that her gagging and occasionally throwing up, was
> related to post nasal drip. We found this was helped by using Nasonex
once
> a day. But I'm sure others on the list can offer suggestions. The
enlarged
> tonsils would also be a reason I would think.
>
> At 02:18 PM 23/01/2004 -0500, you wrote:
>
> >The issue I am writing about is Rachel's frequent gagging and
throwing
up.
>
> Jocelyn, wife to Frank, mother to Ian, Gillian & Susan.
> Nanna to Carly 16, Mathew 15, Ashleigh 14, Alex 11, & Tess 6 years
(T18)
> Living in New South Wales, Australia
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>

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

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

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