[tri-med] Re: Cold Feet

Thanks Karen!  All that makes so much sense!  I feel like I overdress him 
sometimes, but his little legs and feet just feel so chilly. Jackson is really 
tiny and skinny, so there isn't a lot of insulation there either.  We'll be 
getting to the GI clinic in August, hoping to help fatten him up.  Maybe that 
will help his cold tootsies a little.
 
Wendi, mom to Jackson (partial trisomy 4p)
Karen <karens@xxxxxxxxxxxxxxxx> wrote:
----- Original Message ----- 
From: "Kaufman, Faye"
>>Most =
> Doctors just think that is her skin.

I tend to agree with this thought - one of the explanations for Alex's 
ability to drop his temperature so quickly is the lack of yellow fat - in 
short it means that their are a lot more blood vessels closer to the skin 
and that allows his blood to release hot a lot more than typical folk - a 
bit like the fact that skinny people tend to feel the cold more than those 
who carry a bit of weight - it really is insulation :-))

Pooling of blood in the lower extremeties is also a possibility for 
temperature variations in the lower extremities - that occurs with people 
who are seated a lot of the time and its one of the reasons why our kids 
should be standing and laying and just changing positions out of wheekl 
chairs frequently.

In kids with T-13 it could also be due to the fact that many children with 
T-13 have shown narrowing of the blood vessels - that is their blood vessels 
are just plain skinny compared to other folk.

So in short its impossible to say - but it is really quite common in a lot 
of our kids and often it has nothing to do with specific cardiac problems. 
Personally I think that all our kids should have an echo cardiogram at some 
stage to make sure that there are no underlying heart issues - not all heart 
problems can be "heard" and in fact the most serious of all heart problems 
are the quiet ones because the more shunting that is going on the softer the 
sound of the blood going through the hole(s) is. But its also true that some 
of our kids, despite the dire statistics, really do have no serious heart 
problems.

Alex is one, he has had many echo's because they couldnt believe that he had 
no serious heart issues, but he doesnt. He has a patent foramen ovale which 
causes no problems. His cardiac pacemaker is there not because of a heart 
problem but because of the Shapiro's Syndrome which effects his heart rate 
and the body part to blame for that is a teeny tiny gland in the middle of 
his brain.

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

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www.trisomyonline.org
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