[tri-med] Re: Seeking Help

I am laughing out loud at your comment "or at a key moment in our marital
time."  I understand completely as this happened to us about a week ago!!

Thanks for the info.

Aimee

----- Original Message ----- 
From: "Jennifer Vanderbeek" <Phil46@xxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Friday, January 23, 2004 7:03 PM
Subject: [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
>
>

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

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