[tri-med] Re: 02 stats dropping---

----- Original Message ----- 
From: "Therese"
>>Doctors cant see a reason for
> her heart to respond in this way. Lung X-Ray looks a little bit
> "funny". In anybody's experience does this trisomy condition affect
> these things? We would greatly appreciate any experience you could
> share.

Alex did this as a baby and still does - that was the reason for our recent 
hospital trip. Its actually fairly common with our kids and its impossible 
to even attempt to give a reason why because it can be caused by a multitude 
of things.

Many of our children are smallish and have suffered IUGR - thats just not 
size but the growth is a globally retarded. Consequently their nervous 
system is often immature, acting like a premature infants nervous system 
even though they may have been term on dates and size. This makes them 
susceptible to a multitude of breathing problems such as central apnea (the 
brain forgets to keep breathing) and hypoventilation (breathing too 
shallowly and or too slowly)

Alex's O2 sats get lower these days mainly because he hypoventilates. Thats 
hard to pick up except with a full sleep study - he just breathes shallower 
and slower as time wears on. As a teeny baby I used to sleep with him on my 
chest (called kangaroo care) because he would pick up on my breathing rate 
and stop breathing or hypoventilate less often. These days we treat with 
Bi-PAP and /or oxygen. But you need to be guided by your doctor because 
oxygen can actually make it worse in some cases.

If the breathing is thought to be because of immaturity it can be treated 
with drugs - usually caffeine or theophylline (sp?) (ventolin). It makes for 
one very wired baby as a few mums on the list can vouch for but it keeps 'em 
breathing.

The hypoglycemia can again be attributed to immaturity. Alex was 
hypoglycemic at birth. Most of our kids grow out of that within a few weeks, 
once their livers start functioning properly, some like Alex continue to 
suffer from hypoglycemia. In Alex's case its ideopathic - meaning they have 
no idea why he is hypoglycemic and they can only attribute it to the fact 
that his brain produces different amounts of chemicals to most people :-)) I 
presume that the doctors have checked Annie for the usual reasons for 
hypoglycemia that doesn't respond to sugar - eg hyerinsulinism?? (too much 
insulin - in which case the more sugar you give the worse the hypglycemia 
gets) and glucogen storage problems etc.

Don't forget that while many of our kids suffer problems related to the 
trisomy - they can have other problems totally unrelated and we need to 
continually keep that in mind.

Sorry I havent been of much help - there are no hard and fast rules though 
unfortunately - my prayers are certainly with you. Be comforted by the fact 
that many of our children grow out of these problems within a few months if 
you can keep them hanging in there till then. Very, very few are like Alex 
and still have frequent LTE's (life threatening events) at his age.

The supreme happiness of life is the conviction that we are loved.
-- Victor Hugo

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (10 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

Other related posts: