[tri-med] Re: Growth Hormone information

----- Original Message ----- 
From: "Holly "
> I have a question, when they consider that Alex is getting too big are
they
> going by the "typical" growth charts then?

Yes - that is on the typical growth charts, he is totally off the trisomy
growth charts and has been for years.

>>Saying that he is very large
> for a 10 yr. old boy?  I don't think I know what too large is as when I
was
> 10 yrs. old I was over 5 ft. tall also and no one ever thought anything
> about it.  Of course, at about 8 yrs. old I did have some health problems
> related to rapid growth, Osgood-Slaughter(sp?) syndrome.

I am guessing that you mean Osgood Schlatter Syndrome :-) (but I like the
slaughter addition LOL) From my understanding Osgood's is more due to sudden
growth rather than too much growth. Alex had symptoms of Osgoods when he was
3 or 4 years old - you might remember the days when he would refuse to walk?
and seemed to be in a lot of pain? At the time we didn't know if it was a
balance issue or something else because he was non-verbal and had great
difficulty conveying what the problem was.

For general education Osgoods is a condition where the growth or lengthening
of the quadriceps muscle fails to keep up with the growth or lengthening of
the leg bones. In severe cases it can break the bone in what is called an
avulsion fracture - that is the bone breaks because the muscle pulls part of
the bone away where it attaches to the bone.

Avulsion fractures are a way of life with Alex - he has had a few but so far
not of the tibial tuberosity (where the quads attach to the tibia) - his
have been confined to the feet and ankles and happen when he goes over on
his ankles.

But back to your question - part of the reason for Alex getting the AFO's
was to counteract the tightening of his quads - we are trying to force them
to lengthen while protecting his bones. Alex doesn't have osteoporosis
either. His bone density is quite good.

Alex is still only 9 technically (close to 10 and I have started saying 10
early) and the problem is not so much how tall he is but the speed at which
he has been growing since he was a baby combined with his other issues.

Alex had his own "typical" trisomy growth curve - and then he started
growing. We thought he would just catch up but he has gone beyond that and
then some. If he had always been large it would be one thing. Its because he
has gone from super small to super large in such a short space of time -
without a pituitary tumour - thats the concern.

That plus the pre-existing trisomy issues give us grave cause for concern.

For example he has spina bifida with some tethering - the more rapidly he
grows the more the tethering is going to get worse and he will lose function
(eg continence and possible the ability to walk). While the growth plates
haven't closed he will continue to just get taller, hopefully not to
gigantism proportions but thats possible. But because his bone age is
already advanced they will most probably close earlier than most. If GH
production doesn't stop that linear growth will cause the bones to thicken
instead.

That thickening can cause nerves to become trapped, it can also cause his
internal organs to enlarge, his apneas to worsen (it causes obstruction),
increase his sweating (which is already so bad its life threatening - I cant
imagine it any worse).

It can lead to diabetes, impotence, heart disease (that benign PFO could
become a major problem) and the list just gets worse and worse. We are
already dealing with some as you know - the mysterious development of high
blood pressure, the arrhythmias and so on.

Some of the possibilities scare me silly. For example the T-18 increases his
risk of blastomas, too much GH increases that risk again and adds the
additional risk of other cancers eg colon cancer. Made worse by the T-18
predisposition to constipation etc etc.

Treatment options at this stage are a drug call bromocriptine which is NASTY
and yes I yelled that one!! The other option is gentler with side effects
but requires an injection every 8 hours for life. We have just been denied
respite because of the remote possibility of having to give him an
adrenaline injection - I can just see the few services we have total
disappear if he needs an injection every 8 hours.

The reason I am
> curious is because MOrgan had his GH tested a few yrs. back (the blood
test
> one) and it was normal.  The endo. followed him for one year, said he grew
> the same amount as a "typical" 4 yr. old in a single year and she did not
> need to see him again unless a problem came up.

We got the same - except we continued to get follow ups because of the
hypoglycemia. Because we were there anyway he always scored a height and
weight check to boot.

>>So, in a kiddo like Morgan, who
> is very large for t18, is there a reason to consider that he may be going
> the opposite direction?  He isn't terribly large on the "typical" boy
> chart.

Probably not - Alex is large on the typical kids charts. He left the T-18
ones years and years ago and is now above the highest line on the typical
charts. Its hard to remember the days when I got so excited when he actually
even made it onto the T-18 charts!!!!

>>One thing I do know is that MOrgan is extremely calorie sensitive.

Alex is the same - vary his calorie intake even slightly and the weight
drops off like butter in the hot sun. And of course Alex still only has a
drug induced appetite. Stop the appetite stimulant and he stops eating!!

Not sure if I miss the days of worrying about him growing - or just
petrified of the new roller coaster in our fun park which says he is growing
too much.

Love many, hate few, learn to paddle your own canoe.
  -- American Proverb

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

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