[tri-med] Re: Losing weight

----- Original Message ----- 
From: <Bdancho
>>Now we're on to a new
> obstacle. Caleb (full T13) will be 10 days old tomorrow. He is still 
> losing
> weight.

To be still losing weight at 10 days is not that uncommon, especially for 
our kids. But even many typical kids will lose weight for up to a month. I 
guess it depends more on how much weight he is losing. 10% is definitely 
within normal limits.

Alex lost weight for the first 3 weeks (21 days). Sorry - he was 2 weeks and 
5 days when he got back to his birth weight. That is he lost weight for 2 
weeks (16 days) and then gained 320 grams in a couple of days to get back to 
his birth weight at 21 days.

Specifically Alex was born weighing 2.06 kgs (4.5 lbs). At 9 days he weighed 
1.8 kilos or 3.9 lbs (just and with a full bladder!!) So he effectively lost 
20% of his birth weight and he was on nasogastric feeds at that point. At 21 
days he weighed in at 2.1 kgs. (4.6 lbs)

Alex is now almost 12 and weighs in at 44.5 kgs (98 lbs) and is 158 cm tall 
(5 feet 2 inches).

>>We know that there are issues with his liver and kidneys (although I was
> told neither are failing yet).

What are the issues? They suspected kidney and liver issues with Alex but he 
never actually had them - their suspicion was actually educated guesses that 
were wrong.

>>The doctor said that he suspects an electrolyte
> imbalance of some sort and that any testing to determine what is going on 
> would
> be too invasive and he recommends that we bring him home from the NICU and
> just let things be.

What on earth are they thinking about as far as testing? Alex's electrolytes 
were and still are tested via blood and urine tests - minimally invasive. He 
had an MRI of his brain (which we would have done anyway) to check if there 
was something there that was causing the problem (there was - but its just 
not visible on the MRI) and much later he had a SPECT scan of his brain. 
Thats a specialised CT type scan where they measure the uptake of glucose by 
the brain.

I suspect that they may be trying to scare / bamboosle you. Ask them exactly 
what tests they are thinking of and why they would be so invasive. I think 
you will find that the tests themselves are not actually that bad.

> Has anyone experienced difficulties with early weight gaining issues? The 
> doc
> says he's already on more calories than a baby of his age should be.

Yep - Alex never made it onto the graph for typical children until he was 2 
years old. Most of our kids NEVER get onto the regular graph. Are they using 
"typical" height and weight charts or the T-13 specific charts? If in doubt 
go with the T-13 charts....

> Could this really be the end of the road for us already? I feel like I am
> just giving up on him if we don't investigate the cause.

I agree - I really don't think its the end of the road - not by a long 
stretch. Alex continued to struggle with the hypoglycemia and low weight 
until I stopped listening and just went with my gut instinct and doubled his 
calories. You can't just add more formula to make it stronger because its 
too much protein for their kidney's, but in those early months glucose was 
our best friend and then as he got older complex starches were.

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 (11 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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