[tri-med] Re: Digestion

My son also had malrotation of the gut and his appendix was on the wrong
side.  This was missed for 2 1/2 years.  The drs said he had life
threatening asthma, gave us tons of meds and sent us on our way.  Finally
after he had several bouts with pneumonia, five drs later and me screaming
for answers I found a dr that would listen.  He was aspirating food
particles into his lungs and because of the malrotation his blood supply
was being cut off. His surgery was when he was 3 years 3 mo old.  He
recovered beautifully!  No more reflux, no more junkie sounds in his chest
and no more apnea.

Karen
Mom to Nick, T18 mosaic 9 years old

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Katy Roberts
Sent: Tuesday, May 15, 2007 3:51 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Digestion

Hi Cindy,

As I mentioned earlier my son who is now 2 1/2 years
old had a malrotation of the gut and his appendix was
on the wrong side. This was found when he was 5 months
old through a routine barium swallow. But before this
we went through hell with the hospital and our son
died a number of times and suffered severe pneumonia
several times. He was born 3 months premature and we
spent 6 months in PICU with him. The hospital would
not listen to me when I said I thought he had reflux
and that I could literally hear it hitting the back of
his nose while I held him and then al his monitors
would go crazy and his oxygen sats would fall BECAUSE
HE WAS INHALING HIS REFLUX!!
I was only when this hospital said there was nothing
else they could do and that they were sending us to a
larger paediatric hospital some miles away that when
we got to this hospital I starting jumping up and
down. It was like a living nightmare, like running
through treacle. One respiratory consultant listened
to me and said they would do a barium swallow to check
for reflux. I will never forget the faces of the staff
in the raiology room as I tried to feed my son who
could barely drink from a bottle the barium. I said
has he got reflux and the top doctor came over and
said yes but we need to get him to surgery now as he
has a malrotation of the gut. I didn't understand at
the time but once they find a malrotaion they have to
act on it. I asked the surgen afterwards if he thought
this had been causing my son pain and could this be
why he had been so ill the past 5 months he said the
way the malrotation was it would have been causing my
son pain and this could have accounted for the major
apneas he had been getting.
And do you know something, 1 month after the operation
we went home with our son and he did not have anymore
apneas or boughts of pneumonia. I am not saying it was
plain sailing, because he still had reflux and other
issues but I often think if the hospital he was born
in had seen past my sons genetic condtion and done the
very routine barium swallow it would have been found
earlier and he would not have suffered so long.
But he is doing okay now, still some issues but
nothing like before and he has a wicked sense of
humor.

Katy. son with t8 mosaic.
--- toomey <toomey@xxxxxxxxx> wrote:

> I have a question for all those who have had issues
> with doctors and
> hospitals and digestion.  I will try and make this
> explanation short. =20
> 
> My daughter Eleora went to duke in 2003 and had a
> bunch of studies done =
> one
> of which was a gastric emptying study they told us
> there was nothing =
> wrong.
> For about a year after that she had real issues with
> projectile vomiting
> after she ate a few times a week.  She would stop
> breathing and turn =
> blue it
> was really bad. We kept taking her back to the
> pediatrician and to the =
> ER
> they kept saying it was reflux they got us an appt
> back with the Duke GI
> people who proceeded to tell me I had an appt. I was
> never notified of =
> and
> that she had slow gastric emptying.  We were really
> upset but relieved =
> to
> know what the problem was and to get it taken are
> of.  They also told us =
> she
> had no reflux. =20
> 
> About a month ago after 7 aspirated pneumonias in 7
> months we along with =
> the
> pediatrician decided it was time for a g-tube.  In
> the routine studies =
> to
> make sure everything was ok for the tube they found
> out Eleora had
> malrotation of her intestines, Also that her
> appendix was on the wrong =
> side
> of her body, and she had bad reflux.  She ended up
> having a bunch of
> surgeries including a Nissan, correction of the
> malrotation, g-tube,
> appendix removed, hernia repair, and new ear tubes.
> =20
> 
> It is starting to become evident that her issues
> were very likely due to =
> the
> malrotation and that she has been in pain for a long
> time.  Before the
> surgeries she kept her arms close into her chest and
> wouldn't reach for
> anything now 2 weeks later she is already reaching
> and happier I think
> because the reflux is repaired. I am very upset with
> Duke and am not =
> sure
> what to do to insure this kind of thing doesn't
> happen to any other
> families.  We are considering filing a case against
> them but because =
> Eleora
> is so severely handicapped I am not sure it can get
> anywhere what do you
> guys think?
> Thanks
> Cindy
> 
> 
> Live Well, Love Much, Laugh Often!=20
> =20
>  Would a fly without wings be called a "walk?"=20
> =20
> 
> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx
> [mailto:tri-med-bounce@xxxxxxxxxxxxx] =
> On
> Behalf Of Katy Roberts
> Sent: Monday, May 14, 2007 4:37 PM
> To: tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] Re: Digestion
> 
> Hi Katie,
> 
> My son is also 2 1/2 years old and used to vomit
> after
> meals. He was diagnosed with a malrotation of the
> gut
> at 6 months old and this was corrected. Before the
> correction he had terrible reflux and vomiting but
> after the op it was a ittle better but he still had
> refux. The doctors did have him on a medicine called
> domperidome to help clear his stomach faster but it
> was later found that this drug  was linked to heart
> problems in certain people so he was taken off
> it.=20
> My son still spits but I wouldn't say this due to
> vomiting back up his food, I think it is more that
> sometimes the food catches at the back of his throat
> and he vomits to clear it.=20
> I have noticed though about what you mentioned
> regarding the poorly digested food hours later. I
> think my son has this sometimes maybe because he has
> poor muscle tone and I wonder how this effects his
> peristalisis (the natural movement of the gut that
> moves food through the gut).
> 
> katy. son with t8 mosaic.
> --- Katie Cragg <kmcragg@xxxxxxxxxxxx> wrote:
> 
> > Hi--Just wondering if anyone has had an issue with
> > slow or poor digestion in
> > their trier??=20
> > Mitchell is still spitting up/throwing up...A LOT,
> > he will basically throw
> > up everything he has eaten. I'm not sure what is
> > going on but lately it is
> > pretty much everyday. (I know that he isn't sick)
> He
> > takes solids all orally
> > and is almost 2 1/2 years old. It is really
> getting
> > hard to take him out
> > because if we have to eat somewhere other than
> > home--you just don't know
> > when it is going to happen. The reason I ask about
> > digestion is because the
> > other day we had some hot dogs for lunch-which was
> > around 11:00 and then he
> > threw-up that night--around 8:30 and he still had
> > hot dog chunks come up
> > (sorry TMI). That is a good 9 hours, wouldn't they
> > have been digested by
> > then? We see his ped. Tomorrow and I'll ask him
> > about it as well. Just
> > wanted to see if anyone else has had this issue.
> > Thanks
> > Katie=20
> > Mom to Mitchell t13 mosaic
> > Www.caringbridge.org/mn/mitchelljohncragg
> >=20
> >=20
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families
> On-line
> >=20
> >=20
> 
> 
> 
>       =09
>
___________________________________________________________=20
> What kind of emailer are you? Find out today - get a
> free analysis of =
> your
> email personality. Take the quiz at the Yahoo! Mail
> Championship.=20
>
http://uk.rd.yahoo.com/evt=3D44106/*http://mail.yahoo.net/uk=20
>                   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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