Re: Article H-43 - anyone read this?

[Guest guest]

Sheryl -

The H-43 document by Dr. Harbison doesn't actually recommend a

specific 40-50 ounce (didn't want other parents to get confused).

Rather she writes the following (which is pretty standard

information from most " failure to thrive " experts and nutritionists):

" ... feed your baby every 3 to 4 hours around the clock and watch

for signs of reflux. He/she needs at least 130 but ideally 160

kcal/kg/day to catch up and prevent further caloric deficit. This

translates to 3 to 3.5 oz/lb/day of regular strength [20 kcal/oz]

formula or breast milk. The formula can be concentrated to 24

kcal/oz and then he will need only 2.5 to 3 oz/lb/day.

Concentrating formula may increase reflux. "

By concentrating formula, which is critical for our babies, a 12

pound baby would only need a maximum of about 30-36 ounces, and that

is a concentration of 24kcal/oz. With the supervision of a peds GI

and/or nutritionist, you can safely concentrate your baby's formula

up to a maximum of 30kcal/oz -- which would reduce the amount of

ounces you have to get in by even more.

I recommend for anyone that you order article MAGIC H-68, which is

the nutritional presentation handouts from Cindy Baranoski's

presentation at last year's convention. Members of MAGIC can get it

free. It is VERY comprehensive and has TONS of practical

information in there.

Since most of our kids don't hit 12 pounds until they are about 9

months old (and sometimes a year or older).... It sounds like a lot,

but in order to have the baby achieve " catch-up growth " , this is

what it takes.

One of the things many of you new parents will learn at the

convention is a different way of talking that failure to thrive

doctors will talk about. Your pediatrician may say to you " your

baby is getting XXX calories a day; that should be enough for their

size. " Well, the fact is that for an RSS/SGA child, if the child

isn't achieving " catch-up growth " (this means CLIMBING the weight

percentiles, not just following along their miserable lower path --

so climbing from below to continually getting closer and closer to

the 3rd percentile line) -- if they aren't experiencing catch-up

growth, then they aren't getting enough calories, plain and simple.

More calories, more calories, more calories. Being too far

underweight as an infant has been found to have a lot of negative

side effects later. Ideally, weight for height (use the cdc.gov

individual growth charts) should be 15-25th percentile) -- our kids

are never going to be 50th percentile weight for height.

(Remember that we also don't want our kids overweight!)

Hope this explains things a bit. Promise it gets easier, and a lot

more of this will be explained during the convention.

> I've read this letter from Dr. H. and I cannot believe her

> recommendation of caloric intake. For my 13# baby, she is

supposed

> to get like 40-50 oz a day!! She has never even come close to

> this...but, she has gained weight all along...I don't know what is

> considered good weight gain for an RSS baby, but she's been

gaining

> around 1# per month for the last 4 mos or so. I think most RSS

> babies don't gain that much, do they.

>

> Now I am even more worried about her intake...how can I ever get

40

> oz in her???

>

> Sheryl (mom of Dalia, almost 8 mos!, 13# 4oz, 24 1/4 in)

[Guest guest]

The 40-50 oz is just what I calculated for my daughter based on Dr.

H's calorie recommendation. Sorry, I know not every kid needs this

amount.

I just don't hear of any kids on this list actually getting up to

15% in height, unless people just don't write about that. So, if an

RSS baby is usually around 12# at 9 mos (I know it is different for

every baby), then they are far from where they should be at that

point correct? Is it that they just don't get enough calories? And

the kids who are much older and still very light, are they still not

getting enough calories? Don't they get on g-tubes long before then?

If an RSS child was 15%, wouldn't they be much closer to normal

height? I would think that non RSS kids at 15% are not so terribly

short. Maybe I just don't quite get this yet.

So, if a kid doesn't get the proper calories until they get a g-tube

later on, did they get harmed up until that point (I mean brain

growth and all that stuff).

I am just so worried about all this.

> > I've read this letter from Dr. H. and I cannot believe her

> > recommendation of caloric intake. For my 13# baby, she is

> supposed

> > to get like 40-50 oz a day!! She has never even come close to

> > this...but, she has gained weight all along...I don't know what

is

> > considered good weight gain for an RSS baby, but she's been

> gaining

> > around 1# per month for the last 4 mos or so. I think most RSS

> > babies don't gain that much, do they.

> >

> > Now I am even more worried about her intake...how can I ever get

> 40

> > oz in her???

> >

> > Sheryl (mom of Dalia, almost 8 mos!, 13# 4oz, 24 1/4 in)

[Guest guest]

The 40-50 oz is just what I calculated for my daughter based on Dr.

H's calorie recommendation. Sorry, I know not every kid needs this

amount.

I just don't hear of any kids on this list actually getting up to

15% in height, unless people just don't write about that. So, if an

RSS baby is usually around 12# at 9 mos (I know it is different for

every baby), then they are far from where they should be at that

point correct? Is it that they just don't get enough calories? And

the kids who are much older and still very light, are they still not

getting enough calories? Don't they get on g-tubes long before then?

If an RSS child was 15%, wouldn't they be much closer to normal

height? I would think that non RSS kids at 15% are not so terribly

short. Maybe I just don't quite get this yet.

So, if a kid doesn't get the proper calories until they get a g-tube

later on, did they get harmed up until that point (I mean brain

growth and all that stuff).

I am just so worried about all this.

> > I've read this letter from Dr. H. and I cannot believe her

> > recommendation of caloric intake. For my 13# baby, she is

> supposed

> > to get like 40-50 oz a day!! She has never even come close to

> > this...but, she has gained weight all along...I don't know what

is

> > considered good weight gain for an RSS baby, but she's been

> gaining

> > around 1# per month for the last 4 mos or so. I think most RSS

> > babies don't gain that much, do they.

> >

> > Now I am even more worried about her intake...how can I ever get

> 40

> > oz in her???

> >

> > Sheryl (mom of Dalia, almost 8 mos!, 13# 4oz, 24 1/4 in)

[Guest guest]

I think the 15% is weight for height ratio, not height for age chart.

Sabina

> > > I've read this letter from Dr. H. and I cannot believe her

> > > recommendation of caloric intake. For my 13# baby, she is

> > supposed

> > > to get like 40-50 oz a day!! She has never even come close to

> > > this...but, she has gained weight all along...I don't know what

> is

> > > considered good weight gain for an RSS baby, but she's been

> > gaining

> > > around 1# per month for the last 4 mos or so. I think most RSS

> > > babies don't gain that much, do they.

> > >

> > > Now I am even more worried about her intake...how can I ever

get

> > 40

> > > oz in her???

> > >

> > > Sheryl (mom of Dalia, almost 8 mos!, 13# 4oz, 24 1/4 in)

[Guest guest]

I know it feels as though your whole life is consumed with this right now,

but this too shall pass. My daughter is 32 months now and at the 25% for

height, and for the first time ever on the chart at 5% for weight.

One year ago at 20 months she was in the 5% for height and weighed only

16lbs and was a LONG way from even being on the chart.

Why the dramatic difference??? A G-tube was place last October and has

made all of the difference in the world. Alyssa didn't eat enough, not

nearly enough! She does not have reflux but her delayed gastric emptying

test shows serious delays. It takes the average person 30-60 minutes to

digest a meal, it takes Alyssa over 2000 minutes. No wonder she wouldn't

eat, she was never hungry!!

At 9 months Alyssa weighed just at 11lbs and was 25 inches. She consumed

barely 30-35oz of formula a day. No where near the reccommendation! But it

was all she would take.

As far as whether or not the 15% is of normal height, according to the CDC

growth chart for children 2-20, the 15% for a 20yr old is about 5'1 " . Not

too bad!! Of course ALyssa's predicted height without RSS is 5'6 " , which is

a pretty good difference.

From what I understand the problem is although ALyssa is at the 25% now as

she enters puberty, (the next and final big growth spurt) she will actually

be in it less time than most kids and therefore allowed less time to grow,

thereby reducing her final height. So she may go into puberty at the 25%

but come out off the charts. Does that make sense? (correct me if I'm

wrong guys!)

As for whether or not our kids are harmed if they don't get the proper

calories, everything is relative. There are several adults who chime in

here who had NO interventions what so ever. They live as normal and happy a

life as anyone else. So why did I get a tube for my daughter? I wanted her

to have the best I could give, just like all of the other parents of the

world now and then!

If you are going to the convention it will be fabulous and you will learn

sooo much. They even have a class on how to pack the most calories into

your child!! No to mention the fantastic classes on RSS and it's treatment!

Best of Luck,

Dayna, Mom to Alyssa, 25lbs 35.75inc., 32months

Re: Article H-43 - anyone read this?

> The 40-50 oz is just what I calculated for my daughter based on Dr.

> H's calorie recommendation. Sorry, I know not every kid needs this

> amount.

>

> I just don't hear of any kids on this list actually getting up to

> 15% in height, unless people just don't write about that. So, if an

> RSS baby is usually around 12# at 9 mos (I know it is different for

> every baby), then they are far from where they should be at that

> point correct? Is it that they just don't get enough calories? And

> the kids who are much older and still very light, are they still not

> getting enough calories? Don't they get on g-tubes long before then?

>

> If an RSS child was 15%, wouldn't they be much closer to normal

> height? I would think that non RSS kids at 15% are not so terribly

> short. Maybe I just don't quite get this yet.

>

> So, if a kid doesn't get the proper calories until they get a g-tube

> later on, did they get harmed up until that point (I mean brain

> growth and all that stuff).

>

> I am just so worried about all this.

>

>

>

>

>

> > > I've read this letter from Dr. H. and I cannot believe her

> > > recommendation of caloric intake. For my 13# baby, she is

> > supposed

> > > to get like 40-50 oz a day!! She has never even come close to

> > > this...but, she has gained weight all along...I don't know what

> is

> > > considered good weight gain for an RSS baby, but she's been

> > gaining

> > > around 1# per month for the last 4 mos or so. I think most RSS

> > > babies don't gain that much, do they.

> > >

> > > Now I am even more worried about her intake...how can I ever get

> > 40

> > > oz in her???

> > >

> > > Sheryl (mom of Dalia, almost 8 mos!, 13# 4oz, 24 1/4 in)

>

>

>

>

>

>

[Guest guest]

Sheryl - I think it will be a lot clearer at the convention.

Weight-for-height proportion is very different than weight

percentile. The 15th percentile weight-for-height that I referred

to is not the 15th percentile in weight. W-for-H looks at what is

the child's body size/weight in comparison to his height.

A child could be at the 50th percentile in weight and yet be very

thin, if they were off the charts above 98% in height.

Same thing, a child could be OVERWEIGHT and yet have a weight

percentile at the 10% percentile, if their height was 2 or 2

standard deviations BELOW the 3rd percentile curve.

For some reason that we do not yet know, RSS and IUGR/SGA children

seem to need MORE calories than are normal for their size and MORE

growth hormone than is normal for their size.

Hence, yes, somehow you have to get more calories into the child.

Many families are sucessful getting extra calories into a child

through changes in diet alone (adding formula compounds, additives,

Peptamen Jr., etc. or even simpler things like canola oil, cream

cheese, etc). Others move on to medication, like

Periactin/cyproheptadine, which as a side effect increases appetite

(full medical explanation in the MAGIC library). And lastly, other

children are unsuccessful at all of these, or their weight is so

underweight that the doctor thinks they don't have the time to wait

and try any of the above, and hence a g-tube is put in.

You had reported that Dalia was 12 pounds, I think you had said. So

the good news is that with help from a nutritionist, you could

probably compound the formula with additives to the 30kcal and get

it down to 20-25 ounces a day. Even adding to just 24kcal you could

get it to 30oz). And again, this is the " ideal 160kcal/kg/day, not

the optimum 130kcal/kg/day).

If you can only get a baby to take 2 ounces at a time, it truly is a

pain -- it means feeding her multiple times during the night.

Everyone who has gone to the convention in years past grimaces at

hearing Harbison and Stanhope repeat the mantra -- while they are

under one year old, and underweight, it is imperative that these

children do NOT go longer than 4 hours without feeding -- 6-8hours

if they have polycose added to their last bedtime bottle (breast

feeding negates that and it means every 4 hours). It makes sleeping

through the night difficult, obviously, but long-term health and

brain development is far more important.

The MAGIC library documents will explain the entire noctural

hypoglycemia issue. And I think this will be explained more in

depth at the convention.

> > > I've read this letter from Dr. H. and I cannot believe her

> > > recommendation of caloric intake. For my 13# baby, she is

> > supposed

> > > to get like 40-50 oz a day!! She has never even come close to

> > > this...but, she has gained weight all along...I don't know

what

> is

> > > considered good weight gain for an RSS baby, but she's been

> > gaining

> > > around 1# per month for the last 4 mos or so. I think most

RSS

> > > babies don't gain that much, do they.

> > >

> > > Now I am even more worried about her intake...how can I ever

get

> > 40

> > > oz in her???

> > >

> > > Sheryl (mom of Dalia, almost 8 mos!, 13# 4oz, 24 1/4 in)

[Guest guest]

That makes me feel somewhat better...

Yes, my whole life seems consumed with feeding Dalia...the stress

seems too much to handle sometimes...constantly thinking that I am

doing harm to her b/c I can't get enough nutrition in her.

If the gastric emptying is that slow, how does she handle so much

food being put through the tube?

Also, how do you keep her from " unlearning " to use her mouth?

Thanks,

Sheryl

> > > > I've read this letter from Dr. H. and I cannot believe her

> > > > recommendation of caloric intake. For my 13# baby, she is

> > > supposed

> > > > to get like 40-50 oz a day!! She has never even come close

to

> > > > this...but, she has gained weight all along...I don't know

what

> > is

> > > > considered good weight gain for an RSS baby, but she's been

> > > gaining

> > > > around 1# per month for the last 4 mos or so. I think most

RSS

> > > > babies don't gain that much, do they.

> > > >

> > > > Now I am even more worried about her intake...how can I ever

get

> > > 40

> > > > oz in her???

> > > >

> > > > Sheryl (mom of Dalia, almost 8 mos!, 13# 4oz, 24 1/4 in)

> >

> >

> >

> >

> >

> >

[Guest guest]

Sheryl,

It is that exact reason that prompted us to consider a Gtube. Yes it comes

with it's own problems, but they are so much less stressful for me and

Alyssa!! The procedure is pretty simple and the recovery time is quick our

children are very resilient! I resisted the tube for a long time, but after

it all I am so glad that was our choice.

It is because her gastric emptying is so slow that the tube works well.

When you feed a meal you are giving the stomach a large amount at one time,

say 6oz for example. Then the stomach has to digest the large amount all

at once. With continuous tube feeding ALyssa only receives about 2oz each

hour so her stomach is better able to digest. It is never bombarded with a

large amount, it digests small amounts slowly. Does that make sense?

Alyssa is on her pump for 18 hrs a day and off for 3 two hour " meal times "

per day. So she still eats very small amounts 2-3 times per day. Because

she is on tube feeding for most of the day and all night she eats very

little, but it is enough to keep that mouth working. She also loves ice

chips and they work great at keeping those muscles in shape. Because she

was nearly 2 when the tube was placed she had already " learned " to eat, and

we simply had to keep her from forgetting!

I look forward to meeting you at the convention!

Dayna

Re: Article H-43 - anyone read this?

> That makes me feel somewhat better...

>

> Yes, my whole life seems consumed with feeding Dalia...the stress

> seems too much to handle sometimes...constantly thinking that I am

> doing harm to her b/c I can't get enough nutrition in her.

>

> If the gastric emptying is that slow, how does she handle so much

> food being put through the tube?

>

> Also, how do you keep her from " unlearning " to use her mouth?

>

> Thanks,

> Sheryl

>

>

> > > > > I've read this letter from Dr. H. and I cannot believe her

> > > > > recommendation of caloric intake. For my 13# baby, she is

> > > > supposed

> > > > > to get like 40-50 oz a day!! She has never even come close

> to

> > > > > this...but, she has gained weight all along...I don't know

> what

> > > is

> > > > > considered good weight gain for an RSS baby, but she's been

> > > > gaining

> > > > > around 1# per month for the last 4 mos or so. I think most

> RSS

> > > > > babies don't gain that much, do they.

> > > > >

> > > > > Now I am even more worried about her intake...how can I ever

> get

> > > > 40

> > > > > oz in her???

> > > > >

> > > > > Sheryl (mom of Dalia, almost 8 mos!, 13# 4oz, 24 1/4 in)

> > >

> > >

> > >

> > >

> > >

> > >