[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

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