[tri-med] Re: Seeking Help

Elanor is the gag queen.  Unfortunately, we haven't determined exactly
why she does it either.  Our theory is that it is how she has learned to
achieve necessary "expellations".  She gags when she coughs, when she
poops, when she is too full, when she sneezes, etc.  Elanor still has a
cleft palate, so we also think that any drainage from her sinuses goes
right down her throat.

It is sometimes expertly timed to seemingly mock or interrupt.  She
seems especially adept at gagging during the prayer time at church or at
a key moment in our marital time.

As for what we do about it, we make sure she's not choking, have a hanky
ready, and tell her what a wonderful sound she has discovered!

Thankfully, the gagging and retching has decreased in the past couple of
years.  It's pretty funny though, when we go out and she starts to gag,
everybody gives us worried looks and asks if she's ok, if we need to go
or something.  Often we just look at them as if nothing is
happening--we've gotten pretty used to it!  And Elanor has a set of abs
you wouldn't believe!

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: Friday, January 23, 2004 12:19 PM
To: Tri-Med@xxxxxxxxxxxxx
Subject: [tri-med] Seeking Help 

Hi, Everyone:
My name is Aimee and I am new to the list.  My beautiful Trisomy 18
daughter, Rachel, is 33 months old.  Rachel is a "full" T-18, but she
presents as mosaic and is considered "mild and high functioning";
nevertheless, she is still significantly delayed in her development.  My
husband and I absolutely adore her. 

The issue I am writing about is Rachel's frequent gagging and throwing
up.  There doesn't seem to be a pattern to it, although we think there
might be some correlation between the gagging and bowel movements
because she often has this problem within hours before or after a bowel
movement.  In addition, our pedi advises us that Rachel has large
tonsils and that they might be triggering the gag reflex if she moves
her head in a sudden or awkward position. Rachel has mild sensory issues
and likes to bang her head on the floor and this can precipitate
gagging, also.

My question to the group is whether or not anyone else has a child with
this problem and what you do about it?  We have taken Rachel to a
gastroenterologist and had an Upper GI done - which showed her anatomy
to be normal.  We are also investigating the possibility of Reflux.  I
have an appointment with an ENT to discuss the tonsil theory.  Rachel
can be perfectly fine and then, all-of-a-sudden, start gagging.  She
will either recover, dry-heave for awhile or throw up.  It's pitiful to
watch her struggle this way.  We can often go for a week without any
throwing up, but we can also have four out of seven days with problems.

Any suggestions or experience you have to share would be most welcome.
We put Rachel on Miralax about a year or more ago to help with
constipation and that seemed to help a lot, but it did not eliminate the
gagging.  This problem has been going on for two years or so and we
can't take it anymore.  We are seeking help and answers.

Many thanks!

Aimee in Cincinnati
(wife of Bob; mother to Rachel 2-1/2, Jillian 1-1/2 and Ian 5-1/2
months)
                  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: