[tri-med] Re: 5 month old Trisomy 13 baby

----- Original Message -----
From: "jonathan dixon"
>>And it has been happening since he was about 8 weeks old.  Actually it
happened in the car while I was driving home from a doctors appointment.  He
was crying (He hates the car!) and all of a sudden I couldn't hear him
anymore.  I looked back at him and he was blue.

Nancy,
This all sounds too familiar. I had similar experiences with Alex when he
was little and it seems like I also went a similar route in fixing the
problem.

Alex is deaf and like many of our triers is very light sensitive, so car
travel with him as a baby was a nightmare. The deafness meant that he had
vestibular problems, which caused almost immediate travel sickness, and if
that didn't get him his sensitivity to the light would make him cry.

Between the crying and the nausea/vomiting he would frequently have apnea
attacks in the car, turn blue and I would need to pull over and get him
breathing again.

Because we didn't know about the trisomy at the time and because he was a
silent refluxer (he didn't actually vomit) I didn't make the connection
until much later.

I never travelled anywhere without someone in the car beside him. If someone
couldnt go with me we just didnt go. When you are a single mum that
generally means you dont go anywhere. Eventually I got an apnea monitor and
when he was a little older I started putting him in the front seat with me,
and he still travels there..........

It did however contribute to a vicious cycle. Alex was so protective of his
airways that he started to refuse to eat (he equated eaing to reflux and
knowing that it would compromise his breathing) and that aversion to food
stayed with him for a long time.

His apneas in the car and when crying were much improved after he had a
fundoplication (so he couldnt reflux) and went on continous feeds. It took a
long time to get over the fear of eating though.........

A rich child often sits in a poor mother's lap.
  -- Danish Proverb

Keep Looking for Rainbows!!!
Karen, Mum to Alex (8, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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