RE: Anyone else dealt with protein malnutrition? Long reply

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Mathieu never had Protein Deficiency...BUT I did go to a GI and a

Nurtitionist when he was FTT at 8 months old (13 pounds 23 inches). They

suggested I give up BF and start him on supplemental fomrula. I totally

disagreed with their implication that my breastmilk was not sufficient in

caloric intake. I did however, add some powder formula (nutramigen) to

Mathieu's solid foods (cereals and homemade fuits and veggies at 6-8 months

old. After adding more calories to his diet and adding more proteins thru

his solids, it was obvious to the doctor and the nutritionist that I was not

at fault for my child's lack of growth.

I tell you this because some docs attack the strategy of babies that aren't

growing with moms that breastfeed. Some, like mine, may suggest " dump the

breastfeeding and go supplemental " . Keep a diary of all food going in and

coming out. I know they will say, " we can't be for certian exactly how much

she is getting because she is breastfed, (unless you pump and bottle feed).

I stood my ground, even though I was sobbing like lunatic because I thought

what if it is my fault he wasn't growing? Remind them that breastmilk has

20 calories per oz, just like any other formula (unless it is special). It

does have all the vital nutrients in it and it is easier to absorb...If she

is on a Rx for reflux, that should be made clear that adding a formula may

not be beneficial. Take a support with you...Your husand or a great person

that can help you say what you want to if you feel torn down should be

there, so they can help you reiterate what you feel is best for her.

The nutritionists are there to help you, and so is the GI. I do have a

great relationship with both (especially now that we know what is wrong) but

it took a while to trust one another. Rememebr when they are evaluating

your child, they deal with cases where the parents just aren't very educated

and may be lacking the understanding of exaclty how much a brestfed baby

needs to eat, or better yet how much powder goes in a bottle. We had a

nightmare come into the ER at a children's hospital, an 8 or 9 week old

given 1 scoop of powdeer to 4 oz of milk, and then ony 2 scoops to 8 oz of

milk and the baby had lost 2 pounds 8 pounds at birth was close to 6 pounds

in the hospital. She was severly ill, and dehydrated inspite of the parent

feeding her often. The baby regained weight very fast after proper

feedings, and the parents were relieved. Anyway I am babbling.

Mathieu was never diagnosed with RSS. He has Crohn's. Looking back now, I

am very glad I didn't stop breasfeeding. I kept him healthy longer than if

I had taken the docs recommendation and stopped or even supplemented with a

bottle. ( I had a hard time with my first wanting to nurse and supplemet

with a bottle; eventually he chose the bottle) We still have major growth

issues, anemia, Fevers and diarrhea (more fevers and diarrhea since I

stopped nursing 4 months ago) that would never have gone away even if I had

given the supplment or may have become worse dsue to his malabsorbtion. He

is 19 months old now and eats between 1500-2000 calories a day.

Good-luck and stay strong. I hope your first visit with the GI and

Nurtitionist are better than mine was. If you wan to email me offline feel

free. jbrethen@...

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