Re: Anyone else dealt with protein malnutrition?

[Guest guest]

Hi ,

You guys are going through a lot right now! Olivia has tested low

for protein before but not to a dificiant (sp)level so I can't help

you out there very much. I feel for what you are going through but

keep plugging away at it, you're doing a great job!

I would put Autumn back on the reflux med though. A lot of our

RSS kids have silent reflux which can be more of a problem since we

can't " see " it and they rarely complain about it. This is where the

stomach contents back up into the esophagus but the kids swallow it

back down therefore burning the esophagus twice each time. Olivia

never complained at all but without her reflux meds she eats next to

nothing. Now that she's older though she will tell me " my puke just

came up but don't worry, I swallowed it " (yuck!). I think it's

important that you try the reflux meds again for a month or so to

see what kind of a difference there is in her appetite.

Hope this helps.

Leah, mom to 9years and Olivia 4.75 years, 19lbs!, 33 " , RSS,

OI, lots of meds

> 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

[Guest guest]

Hi Leah,

Thanks for the info on reflux. We had never seen a doctor for it

before she was 7 months. I mentioned her constant spit up in

excessive amounts to her ped but she kept saying it was an immature

digestive tract. Didn't think much of it until her genetisist saw

her. You're right,I think I should try it(medication) and see. I need

to get her gaining weight!

> > 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

[Guest guest]

,

Before I add my two cents, I wonder how do you know how much Autumn is consuming

if

you are breastfeeding?

My RSS child is almost 11. He was 12 weeks early and very sick when he was

born. I

pumped breastmilk for him for 4 months. He had extreme difficulty gaining

weight as do

most RSS kids. The hospital added human milk fortifier to the breastmilk to add

calories.

He still did not gain weight. Finally, when he was 4 months old, the hospital

suggested

that perhaps my breastmilk did not have enough calories for him. Even though it

is

supposed to have 20 calories per ounce, I was told this isn't always the case

(there may be

a range of 18-22 calories/oz.). It turns out he didn't do any better gaining

weight on the

formula even though they added polycose for extra calories. He was discharged

from the

hospital at 7 months old weighing only 4.5 lbs.

With formula however you can mix it to up to 30 calories/ounce strength if

necessary.

That being said, I have a non RSS daughter who will be 7 months old next week.

She eats

the same amount Autumn does - drinks 20-24 oz./day & eats 1 - 2 small solid

food

meals. She has severe reflux and has been on meds since she was 1.5 months old.

She

had difficulty gaining weight early on due to her reflux, so the GI doctor told

me to

increase the formula strength to 24 calories/oz. I do this by adding 3 scoops

of powder to

5 oz. of water or by adding only 9 oz. of water to a 13 oz. concentrate can.

This has made

a big difference. She still throws up a lot, but she is gaining weight nicely

now. She is 17

lbs. now and looks like a little porker.

If I were you, I would try the reflux meds again. Autumn may have silent reflux

which

could be making eating aversive. All 3 of my kids have had reflux. Some signs

of silent

reflux may be arching her back, grimacing, making a face like something sour is

in her

mouth, chewing/swallowing when not eating, unexplained coughing, unexplained

crying/

screaming, and with my silent reflux child - he used to gulp all the time. I

could hear the

milk coming up, but he never vomited.

I wish you luck in dealing with Autumn's issues. I know how frustrating it gets

when you

go from one doctor to another still wondering if you are doing the right thing

for your

child.

Kim C.

> 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

[Guest guest]

,

Before I add my two cents, I wonder how do you know how much Autumn is consuming

if

you are breastfeeding?

My RSS child is almost 11. He was 12 weeks early and very sick when he was

born. I

pumped breastmilk for him for 4 months. He had extreme difficulty gaining

weight as do

most RSS kids. The hospital added human milk fortifier to the breastmilk to add

calories.

He still did not gain weight. Finally, when he was 4 months old, the hospital

suggested

that perhaps my breastmilk did not have enough calories for him. Even though it

is

supposed to have 20 calories per ounce, I was told this isn't always the case

(there may be

a range of 18-22 calories/oz.). It turns out he didn't do any better gaining

weight on the

formula even though they added polycose for extra calories. He was discharged

from the

hospital at 7 months old weighing only 4.5 lbs.

With formula however you can mix it to up to 30 calories/ounce strength if

necessary.

That being said, I have a non RSS daughter who will be 7 months old next week.

She eats

the same amount Autumn does - drinks 20-24 oz./day & eats 1 - 2 small solid

food

meals. She has severe reflux and has been on meds since she was 1.5 months old.

She

had difficulty gaining weight early on due to her reflux, so the GI doctor told

me to

increase the formula strength to 24 calories/oz. I do this by adding 3 scoops

of powder to

5 oz. of water or by adding only 9 oz. of water to a 13 oz. concentrate can.

This has made

a big difference. She still throws up a lot, but she is gaining weight nicely

now. She is 17

lbs. now and looks like a little porker.

If I were you, I would try the reflux meds again. Autumn may have silent reflux

which

could be making eating aversive. All 3 of my kids have had reflux. Some signs

of silent

reflux may be arching her back, grimacing, making a face like something sour is

in her

mouth, chewing/swallowing when not eating, unexplained coughing, unexplained

crying/

screaming, and with my silent reflux child - he used to gulp all the time. I

could hear the

milk coming up, but he never vomited.

I wish you luck in dealing with Autumn's issues. I know how frustrating it gets

when you

go from one doctor to another still wondering if you are doing the right thing

for your

child.

Kim C.

> 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

[Guest guest]

I understand what you are saying Kim. And, I suppose I offended some folks

by telling her that stopping the BF may not help her daughters growth. I

just wanted to make sure she knows the truth before she goes into the GI and

nutrition and gets attacked the way I did. They usually accuse (not meaning

to) the mom of starving the child, unintentinally and then say to go

supplemental. Yet, I know from working in Pediatric hospitals and clinics,

we support BF moms (unless they stop growing), then we play the " we need to

SEE how much they are taking game " . Not getting enough nourishment from BF

is sooooo rare. has had two babies that nursed and grew well from

it...that is how she knows.

You are correct about calorie intake on BM, it can vary from perosn to

person, based on what they eat, and the age of the infant. For the most

part it averages at 20 Cal per oz. But, even if her daughter is only

getting 18 cal per oz, she can make up the other calories by adding the

powder into her solid food. She doesn't have to offer a bottle(a baby that

age usually doens't like it and it's a fight and stresssful for both) and

she can hide in things she may like bananas, carrots or applesauce and rice

cereal. It is easy to add an additional 30 calories to a solid food.

It is also necessary to take into consideration that BF infants slow down

growth sooner than formula fed infants....so in the case of an RSS baby, (or

mine with Crohn's) they are already small and it appears they need more

help, even if they are getting adequate nutrition. Being small won't be her

down fall, making sure her brain is still developing (Autumn's head has

continued on the same growth curve just like Mathieu did even though her

body is still struggling is still okay) ALmost everyone here, including our

son will face GH options at somepoint.

My son also had silent reflux, and it was absolutley awful.. Nursing is

comfort and relaxing for a baby...When I did try formula he fought it and it

aggravated his already awful reflux. When he felt awful, the nursing helped

soothe him and it didn't bug his stomach so much. The supplement became a

viscous cycle for both Mathieu and I both.

I had a hard time feeling it was my fault, and I want to know that

her daughter's growth is not her fault at all. Our bodies tailor to the

babies needs. I know I do not have an RSS baby, but I stay here because it

is the best place I can get information for my little munchk'n.

My apologies if I offended anyone, I know how it feels to go thru turmoil

for choosing to continue to BF as long as she has. I do hope she continues

to do so, as it is the best thing for a baby, and especially for one with

medical issues. Now that Mathieu is 19 months, that is old hat and I go

thru new things, but he is older, and can communicate a little better than

he used to. It helps when your child can communicate witout tyring to

guess, " How can I make you feel Better. "

Again Sorry, and sorry for the long post.

Jay

,

Before I add my two cents, I wonder how do you know how much Autumn is

consuming if

you are breastfeeding?

My RSS child is almost 11. He was 12 weeks early and very sick when he was

born. I

pumped breastmilk for him for 4 months. He had extreme difficulty gaining

weight as do

most RSS kids. The hospital added human milk fortifier to the breastmilk to

add calories.

He still did not gain weight. Finally, when he was 4 months old, the

hospital suggested

that perhaps my breastmilk did not have enough calories for him. Even

though it is

supposed to have 20 calories per ounce, I was told this isn't always the

case (there may be

a range of 18-22 calories/oz.). It turns out he didn't do any better

gaining weight on the

formula even though they added polycose for extra calories. He was

discharged from the

hospital at 7 months old weighing only 4.5 lbs.

With formula however you can mix it to up to 30 calories/ounce strength if

necessary.

That being said, I have a non RSS daughter who will be 7 months old next

week. She eats

the same amount Autumn does - drinks 20-24 oz./day & eats 1 - 2 small solid

food

meals. She has severe reflux and has been on meds since she was 1.5 months

old. She

had difficulty gaining weight early on due to her reflux, so the GI doctor

told me to

increase the formula strength to 24 calories/oz. I do this by adding 3

scoops of powder to

5 oz. of water or by adding only 9 oz. of water to a 13 oz. concentrate can.

This has made

a big difference. She still throws up a lot, but she is gaining weight

nicely now. She is 17

lbs. now and looks like a little porker.

If I were you, I would try the reflux meds again. Autumn may have silent

reflux which

could be making eating aversive. All 3 of my kids have had reflux. Some

signs of silent

reflux may be arching her back, grimacing, making a face like something sour

is in her

mouth, chewing/swallowing when not eating, unexplained coughing, unexplained

crying/

screaming, and with my silent reflux child - he used to gulp all the time.

I could hear the

milk coming up, but he never vomited.

I wish you luck in dealing with Autumn's issues. I know how frustrating it

gets when you

go from one doctor to another still wondering if you are doing the right

thing for your

child.

Kim C.

[Guest guest]

Hi ,

When was 7 months of age, weighing 7#, his prealbumin level was

measured at 12, and the Drs considered him to be malnourished and catabolic.

They hospitalized him for two weeks, and worked on a feeding regimen for

him. They found that we weren't getting enough formula into him during a 24

hours period, so the Drs moved him up to a 30kcal/oz dilution.

At that time, they insisted that we get 3oz of formula down him every 3

hours. It didn't work. They missed his silent reflux, even though it was

severe, and he developed an oral aversion.

He went to see Dr H in NY at 8.5 months of age, weighing 8#. She was

appalled at how hard it was to get him to eat! She caught his reflux

immediately, and insisted that he have the triple procedure (fundo,

pyloroplasty, and g-tube placement) before we took him back home to Ohio. At

that time, she was saying that he needed to be getting 160kcal/kg/day.

If you like to see a picture of him at 8 months old, there is one posted in

the Photo section under Lee.

Pat (g-ma to , RSS, 32 months, 22.5#, 31.8 " , G-Tube)