Anyone else dealt with protein malnutrition?

September 19, 2004

Has anyone experienced a protein deficiancy (prealbumin level 14.1

normal level 15.2-24.0)) in your RSS child? We have been undergoing

so many tests I just don't know what's next. I have previously

posted about my 8 month old daughter and her possible RSS diagnosis

and she has some possible kidney problems, but her genetisist just

received results saying she has protein malnutrition and I just don't

know how that happened.

I thought she had been feeding well,(she's breastfed)she's always

satisfied after eating and refuses any more if I offer it. I started

keeping a food diary, and it turns out she takes about 24 oz a day.

She also is not much of a solids eater yet. Some days she'll take a

jar of fruit and some cereal, other days, like today, just a few

bites. I can't get her to take any more of anything, even a bottle.

She's full(or so she thinks)

Does anyone know how much is enough for 8 months? She is only 12 lbs

3 oz and 24 1/4 inches. She has not gained much weight but her body

has grown 1/2 inches and her head is up to the 50 percentile. She was

following her curve up until 6 mos, but still follows it with her

head growth. The doc is not concentrating on her kidneys (her tests

show she cannot concentrate urine...could be potential problem) now

because this could be the cause of her not gaining weight. He said

she is not losing protein through her urine, so she must be losing it

somewhere else or not getting enough. I have a good diet with plenty

of protein and I just don't know what to do. I can't make her eat

anymore, she won't, but again, is 24 oz and some solids enough for a

12 lb 8 mos baby to thrive? She has an appointment with a GI

(malabsorbtion) in October along with a nutritionist and possibly an

endo depending on the growth hormone results we should receive

tomorrow.

We were given a prescription for reflux but didn't use it because

she stopped spitting up all the time and only does it occationally.

Thank you everyone for all your support. It's nice to connect with

people who understand what we are going through.

mom of autumn 8 mos poss rss and 2 boys non rss

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