Stefanie,

My daughter (4mo DS) has been in and out of the
hospital with respiratory issues her short little
life. We have just started working with Ear, Nose,
Throat specialists who have checked her for
aspirations. You may want to see what kind of opinion
they have for your daughter. I'm not sure where you
live but I'm lucky enough to live in MN close to Mayo
Clinic and her ENT doctors are great. The one does a
lot of work with DS children and diagnosing the not so
common medical issues they might have. I hope you
find some answers!

Missy (Miley's mom)
--- Stefanie Childers <stefchilders@...> wrote:

> Hi Julie,
>
> I also have a DS daughter (5.5 yr) now that has
> been diagnosed with silent aspiration. It was so
> bad in a swallow study that the doctors wanted to
> g-tube her. She was about 2 then. I chose not to
> and they started thickening her liquids with THICK
> IT. To this day we still thicken her liguids and
> she still drinks out of a sippy cup.
>
> My question is which specialist do you see for the
> aspiration. Her asthma and gerd doctors aren't
> really focused on this problem.
>
> Any direction would be great. She is gettin older
> and see everyone drinking regular stuff and she
> wants them.
>
> We have seen speech/swallow therapist for this,
> and they really have no recommendations other than
> her muscle's have to strengthen still.
>
> Thanks,
> Stefanie in MI ( mom to Lauryn Heidi 5 1/2 ds)
>
> Julie Dinkins-Borkowski <julie@...>
> wrote:
> Phoebe had swallowing issues at two
> months of age and she had silent aspiration. It was
> silent, but it still hurt her when it happened. I
> was told that because she had severe hypotonia
> (floppy muscles) when she was born that it affected
> her swallowing mechanism. It got so bad she would
> refuse to eat. When the doctors finally figured out
> I was NOT starving my child, but frantically trying
> to feed her, they put in a g-tube. Not to say this
> would happen to Julian, I just wanted to give you
> our story.
>
> She also had bluish hands and mottled skin. The
> doctors told me it was partly due to the smooth
> muscles in the veins and arteries being floppy as
> well. As she has gotten stronger, these issues have
> gotten better.
>
> Julie Dinkins-Borkowski; Nolan(5) nocf,
> Phoebe(3) Ds & cf
>
> Phoebe Updates CLICK HERE
> "The future belongs to those who believe in the
> beauty of their dreams."
> – Eleanor Roosevelt
>
>
>
> From: down_syndrome@yahoogroups.com
> [mailto:down_syndrome@yahoogroups.com] On Behalf Of
> emily_sweethang@...
> Sent: Tuesday, April 29, 2008 6:03 PM
> To: down_syndrome@yahoogroups.com
> Subject: Re: [down_syndrome] Re: Can anyone relate?
>
>
>
> Oh my gosh guys. I am so glad to know all
> this I wondering if my little Julian almost 5 months
> could have this he really is having so much
> problems at night and one of his little hands is a
> little blue when it is cold. He was started on a few
> solids, applesause, squash, pears and rice cereal
> really thin but he is having difficulties and
> squirms so after a feeding. I am just glad to know
> this and I will ask because I have been worried yet
> they say everything is cool. But I am a nurse and
> worry so and I have noticed him squeeking at night.
> I hear it on the baby monitor.
>
> My heart goes out to you guys and thanks for the
> info.
>
> Emily
>
> ----- Original Message -----
>
> From: Rachel
>
> To: down_syndrome@yahoogroups.com
>
> Sent: Tuesday, April 29, 2008 7:44 AM
>
> Subject: [down_syndrome] Re: Can anyone relate?
>
>
>
> My son, who will be 7 next month, was in the
> hospital for the first 2
> weeks of his life. He too was diagnosed with
> laryngomalacia. Malacia is
> the medical term that means "softening" so basically
> it's just a
> softening of the larynx... which means it's kind of
> floppy so when he
> would breath, it would flap upward on the exhale and
> then would be
> sucked inward on the inhale. For some kids, during
> the inhale the flap
> can obstruct breathing.. for my son, it made him
> sqeak while he was
> sleeping. He was having 400 apneaic phases per night
> during a sleep
> study. He was also diagnosed with GERD. We elevated
> his bed and kept
> him upright pretty much the first 3months of his
> life. After that, we
> had another sleep study that came out relatively
> normal.
>
> I myself had tracheamalacia as an infant and I and
> my son grew out of
> our conditions around 9months of age.
>
> My thoughts are with you.
>
> --- In down_syndrome@yahoogroups.com, "Melissa"
> <missyavery_2110@...>
> wrote:
> >
> > I have been sitting with my almost 4 month old
> daughter in the
> hospital
> > for 8 days now. This is her 6th hospital stay and
> the doctors are
> now
> > finally trying to get to the bottom of why she
> keeps having problems
> > with her oxygen levels. We has a procedure done
> with the ENT doctors
> > the other day and they informed us that she has
> Laryngomalacia. Has
> > anyone else's child had this diagnosis? The doctor
> says it occurs in
> > about 5% of children with Down syndrom. I've been
> reading up on it
> but
> > was wondering if anyone else has gone through
> this.
> >
> > Thanks,
> > Missy and Miley(4 mo DS)
> >
>
>
>
>
>
>
>
>
>
>
>
> ---------------------------------
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