[tri-med] Re: Questions about weight/Fawna

----- Original Message ----- 
From: "Janet King"
> We were told that the extra chromosome is what causes the kids to have
> higher metabolism. Hannah has the same "problem".

Thats a generalisation rather than fact. Its a bit like saying that all 
children with a chromosomal anomaly are delayed. A lot are but its also 
variable depending on the person, genes, type of anomaly etc.

I have never seen any hard evidence that the "extra" chromosome causes a 
fast metabolism. Its certainly characteristic of T-18 when they are young, 
but kids with T-21 tend to have a slow metabolism, and kids with T-13 don't 
have the same calorie requirements that 18'ers do. And kids with T-18 tend 
to slow down with their calorie requirements once they hit puberty. Diets 
replace the "how do I get more calories in" scenarios for families.

Alex was certainly the "fast metabolism" and always failure to thrive look 
as a baby. I tried every means known to man to get enough calories in 
because he just burnt them up faster than I could get them in. I complained 
to John Carey in 1997 about it and he said one day I would be watching him 
to try and stop him getting fat. He was right, these days, at the grand old 
age of 12, we are starting to watch the weight situation. He still needs 
loads of calories, but these days too many and he starts getting fat 
deposits.

Was it ever fast metabolism? I am not sure. His "metabolism" slowed down 
once he got the g-tube and he wasn't working so hard to eat (and burning 
calories just to eat). It also slowed down once he had his breathing issues 
relieved - another known problem that burns up the calories. He is / was 
also hypoglycemic, that takes a lot of calories too. So you can call it 
metabolism if you want, but its probably not just the extra chromosome that 
causes it. Personally I think (my opinion only) that with 14'ers growth 
hormone deficiencies could "cause" at least part of the fast metabolism. It 
was certainly one of the things that they checked out with Alex as a cause 
of his "excessive" need for calories because thats a fact - kids with a 
growth hormone deficiency tend to burn the calories faster than normal. They 
also tend to be hypoglycemic.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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