[tri-med] Re: Seeking Help

That sounds just like us!  Matilda is 5 yo and we call her a professional
vomiter!!!  If we could bottle it and sell it we'd be rich!!  She will
always gag and if successful vomit at poo time, if we show her something we
are eating she will stick her tongue out and gag as if warning us that if it
goes anywhere near her mouth she will vomit on us.  She has vomited on
teachers she just does not like - or people who treat her like a baby. A lot
of Matilda's can be behavioural and her GI said that he agrees with that and
loves her sense of humour.  We can now pick the "real" times and take
serious action.  Just the other day Tom was annoying her and she was doing
the big gag so I handed her a vomit cloth and said "there ya babe, sort
yourself out" she held it up to her chin and then threw her head back and
laughed at me.  She did spit up a little into the cloth and then threw it at
her brother.  I watch from afar and enjoy the sibling biffo!!!!  As a family
we have decided that we are crazy and to truly enjoy being a disabled family
you have to have a sense of humour and not give a damn what the neighbours
think!!!

On a serious note, Matilda has started to reflux a little more often and now
is on losec, but Dr Ted (her GI) said not to get too concerned, she still
has her vomiting sense of humour.  The other day at her appointment with him
they had a gagging competition - Matilda won hands down but Dr Ted reckons
he did.......

Catherine, wife to Richard and mum to Matilda 5yo (full T-18) and Tom 3yo (&
bump)
----- Original Message -----
From: "Jennifer Vanderbeek" <Phil46@xxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Saturday, January 24, 2004 11:03 AM
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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