[tri-med] Re: Seeking Help

Meierlaw <meierlaw@xxxxxxxxxxxx> wrote:
>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

Welcome Aimee and Rachel! My T18 baby's name is Rachel as well. She's only 5.5 
months old


>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. 

Yes, our Rachel has the same problem since her first vaccinations at 2 month 
old. We have thought it may be related to her intestinal malrotation, but since 
your Rachel's anatomy is normal, then that's not the reason. We keep Rachel's 
constipation down by giving her a couple ounces of pedialyte a day. If she goes 
over 24 hours without a bowel movement, then we give her a dose (1/4 tsp) of 
olive oil (our ped recommended mineral oil, but a family member whose a ped 
recommend olive oil because it's digestable and she could use the calories) 
with 10cc formula half hour before a feed. These has work well for her 
constipation, but the spit ups always persist.

>She will either recover, dry-heave for awhile or throw up. It's pitiful to 
>watch her struggle this way

Our Rachel gets a red face (so red it almost seem blue at times) like she's 
choking, spits up (sometimes it comes out the nose as well) and when done she 
give a loud cry. It was scary to see at first, but we got use to it. I don't 
think there's much we can do about. It's something I hope she can outgrow. 


>. We are seeking help and answers.

Sorry there's no answers, but you are not alone. Love to hear more about your 
Rachel.





Katrina 
Mom to Rachel (full T18 b.Aug 4,2003) 
Patterson, New York USA
http://users.rcn.com/pngai/rachel

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