[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

Other related posts: