[tri-med] Re: [tri-family] Re: Mieko's bottling/another problem

Elanor has apnea as well, and we wouldn't have known it if we hadn't
gone to the last conference, where it was recommended that all t18 kids
could benefit from a sleep study.  Elanor's sat levels also dip in the
night.  She doesn't need oxygen now, and it is even more evident than it
was when she was on o2 at night.  She is now on c-pap, and although she
hates it, it has helped her apnea.

Jennifer, mom to Elanor-4!, full T18; and Arwen-6; caregiver to Joe-25
cerebral palsy & spastic dysplasia; wife to Andrew-32 and wonderful! 
Boise, Idaho USA


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Karen
Sent: Wednesday, May 26, 2004 6:07 PM
To: tri-family@xxxxxxxxxxxxx
Cc: Tri-Med
Subject: [tri-med] Re: [tri-family] Re: Mieko's bottling/another problem

----- Original Message ----- 
From: "Maya Nishikawa"
> There is one more concern that's popped up. Her oxygen
> sats have been dropping into the 70s and low 80s.
> She's usually in the 90s. We use an oximeter at night.
> She bounces back up, but she did this several times
> over the course of about 3 hours last night. Have any
> of you had this problem? The homecare nurse checked
> and her lungs are clear and there's no other obvious
> sign of what's causing the drop.

The two things may be related. That is the desatting while sleeping and
the
problems eating.

Children with T-18 have very small airways, and this is a large part to
why
so many sound congested even when they don't get a cold. Sometime too
they
can have other issues related to the structure of the airways. For
example
Alex has choanal stenosis. The boney plate at the back of the nose has
two
"holes" in it to allow air through - in Alex these holes are smaller
than
normal plus there is a membrane that grows over and covers it - meaning
that
less air gets through and he has to work harder to get what he does
through.

The small airways contribute to something called obstructive apnea -
meaning
simply that there is something "mechanical" obstructing the airway. Its
very
common and there is often more than one obstruction - eg they may have
small
airways and be able to overcome that, but when you add larger adenoids,
perhaps tracheal malacia (low tone in the airways) and so on it gets bad
enough for them to start "desatting"

Obstructive apneas are NOT detected on apnea monitors because the child
is
still trying to breathe - its just that there is not enough air getting
through. Obstructive apneas untreated can however lead to central
apneas.
(the brain gets accustomed to less oxygen and so tells the body to quit
trying so hard and it becomes a viscious cycle).

Feeding and obstruction in the airways is not a good combination. Alex
used
to have to work so hard at just breathing alone that he could not
combine
drinking from a bottle and breathing together. It used up just too much
energy and he would tire withing a few minutes. He preferred breathing
to
eating - so he quit eating.

To see if this is part of Mieko's problem try attaching the pulse ox
when
she is eating - bet she desats badly.

They are however deteced by pulse ox's as you have discovered - the
great
news is that they CAN be treated AND as our kids get bigger and stronger
they can grow out of them. The bad news is that they can be dangerous if
left untreated.

Untreated obstructive apneas effects and reduces growth and development
(all
the energy is going into breathing - there is nothing left to grow on)

Sleep is disrupted and they dont get enough REM sleep (the sleep we need
so
badly) Its disrupted because they are consciously having to rouse
themselves
out of deep sleep to get oxygen.

Consequently they are sleepy during the day - and when they are awake
they
tend to be irritable and unsettled.

It can worsen, exacerbate or even create cardiac issues - not only are
their
little lungs and bodies working overtime to breathe - so are their
hearts.

We left Alex's obstructive apneas untreated for 12 months, because I
didn't
know any better. It almost killed him a few times. Finally when he was
10
months old I fronted up at our Children's Hospital ER and REFUSED to
leave
until someone did SOMETHING.

They agreed to do a sleep study to appease the neurotic mother. Withing
an
hour of the sleep study starting he had desatted to 60% and so they had
a
crash cart sitting on his bed and the intensive care specialist down in
the
sleep lab discussing the possible need for a tracheotomy.

We avoided the trach and went on C-PAP, which he didnt tolerate well.
Then
at 12 months they removed his tonsils, adenoids and uvula - not because
there was anything wrong with them and they werent contributing to his
obstruction - but they were easier to remove than treating the real
problem.
And removing them gave him more room for air.

Alex's obstructions were not "seeable" until he had an LBO (the knocked
him
out and put a camera down through his nose into his lungs). He had 10 or
so
points of obstruction. The choanal stenosis, the membrane which
effectively
created an atresia, bronchotracheal malacia (the airway collapsed onto
itself when he breathed sometimes - making a sound called a stridor - we
used to call it his guinea pig impression because thats what it sounded
like). His brachial artery has a "funny" route through his body and
actually
impinges on his airway and so on. His soft palate was extended and
floppy
with a super huge uvula. (it was so large that it physically rested on
his
tongue causing him to choke)

All could have been repaired, but they were big operations, it was
easiest
to try the adenoids etc first. It worked, and he could go off C-PAP soon
after. Unfortunately it created other problems with eating and so he
still
ended up with a g-tube. And also unfortunately we had left it too long
resulting in him developing central apneas (much harder to treat). They
have
gradually improved but have not totally resolved 10 years later.

I guess what I am trying to say is that this is not something that you
should ignore. Get a referral to a sleep specialist sooner rather than
later
and make sure they do a sleep study. A sleep study will tell you exactly
what is going on and what can be done to treat. A lot of our children
have a
problem with obstructive apneas - but treated they do very well. To help
Mieko it may be as simple as changing the NG tube to an OG or a
gastrostomy
(the feeding tube takes up airway space as well)

Screening for obstructive apneas in children with trisomies, even T-21
is a
recommendation by all those involved in treating our kids. Of course I
didnt
find that out until after I had contacted SOFT and by that time Alex's
had
been treated. I often wonder if it caused long term problems that could
have
been avoided if we had known earlier. I still organised to fly Alex over
to
John Hopkins for his apneas to be assessed by a pulmonologist who was a
medical advisor to SOFT.  Without that I am positive Alex wouldnt be
doing
as well as he is today.

I have not lost my mind - it's backed up on disk somewhere.
-- Unknown

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (9 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  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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