Brady faliure to thrive

[Guest guest]

Hi, I don't post messages very often about my son Brady but something

has the doctors and I very stumped.

Brady is not gaining any weight and he is 5 months old. He weighs 6

pounds. Brady gets weighed one time a week sometimes as many as three

times per week. He stays at one weight or else he loses a whole

ounce. I am very afraid that if he doesn't start growing and gaining

weight he is going to die. If any one out there know what I can try

that maybe worked for their baby with RSS please let me know. I am

willing to try anything at this point.

mom of Brady Lee

[Guest guest]

Hi ,

Not gaining weight even in young infants is something that happens

often with RSS children.

I do not think your child is in mortal danger. As long as he is

taking in food he is OK. Also, 6 pounds at 5 months is a pretty good

weight for an RSS child.

I know this can be frightening but it is soemthing that does happen

with RSS children.

To help put this in perspective, my son is 5 3/4. He has been within

5 ounces of his current weight for over a year despite being on

periactin and growth hormone. Even with the no weight gain, he is

happy and (thank god) healthier than most of his class mates.

If your son starts losing weight, then your doctros might consider

using periactin to stimulate his appetite or even an ng tube or g-

tube to get him the calories he needs. At the same timwe they may run

some GI test to make sure he doesn't have some problem absorbing food

etc.

I think your son is a long way from being in any danger, but that doe

not mean you should not be vigilant ( as you are ) and watch him

closely.

Have you tried a higher calorie formula? Also, has any one suggested

using polycose or other calorie booster in his formula. Maybe these

can help. Please ask your doctor and keep monitoring your son. My

guess is he is going to be fine.

I hope this helps.

Ken M

> Hi, I don't post messages very often about my son Brady but

something

> has the doctors and I very stumped.

>

> Brady is not gaining any weight and he is 5 months old. He weighs 6

> pounds. Brady gets weighed one time a week sometimes as many as

three

> times per week. He stays at one weight or else he loses a whole

> ounce. I am very afraid that if he doesn't start growing and

gaining

> weight he is going to die. If any one out there know what I can

try

> that maybe worked for their baby with RSS please let me know. I am

> willing to try anything at this point.

>

> mom of Brady Lee

[Guest guest]

Hi ,

How well does Brady eat? Is he on any solids yet?

My daughter is almost 11 mos old and weighs 11lbs 7oz. At 5 months I

think she weighed about 7lbs. She was 3lbs 3oz at birth. After she

was diagnosed RSS at 6mos (seemingly obvious in her case as she has a

lot of the characteristics) her dietician perscribed Infatrini, a hi-

cal formula. This helped her gain a little more and also means that

she is getting a good amount of calories on her less-hungry days.

I am sure that your doctors will make sure that Brady's weight loss

does not get so bad as to cause problems. Do you currently see a

paediatrician?

In any case, I am sure this board will be helpful for you as there

are plenty of parents going through similar situations to you.

Love Rae (mum to , RSS, 11mos, 11lbs 7oz, 61cm)

> Hi, I don't post messages very often about my son Brady but

something

> has the doctors and I very stumped.

>

> Brady is not gaining any weight and he is 5 months old. He weighs 6

> pounds. Brady gets weighed one time a week sometimes as many as

three

> times per week. He stays at one weight or else he loses a whole

> ounce. I am very afraid that if he doesn't start growing and

gaining

> weight he is going to die. If any one out there know what I can

try

> that maybe worked for their baby with RSS please let me know. I am

> willing to try anything at this point.

>

> mom of Brady Lee

[Guest guest]

,

So many of us have been in your shoes! It is not unusual for an RSS

baby to be diagnosed as failure to thrive. But, I do have to

disagree with some of the responses you have received. I think that

6 pounds at 5 months is too low and Brady should be watched for low

blood sugar and ketones.

Has anyone talked to you about tube feedings? With tube feedings,

you can get Brady to " eat " even if he does not want to. He can be

on continuous feeds or bolus feeds, depending on whether or not he

has reflux and/or delayed gastric emptying. The advantage to the

tube feedings is that it takes the pressure off of you. You know he

is getting what he needs to gain weight and grow. He is too young

to try Periactin. That is not usually tried until the baby is

closer to two years, although there are exceptions.

If your doctor has not already done so, you should consider asking

for an upper GI series to be done to check for reflux, or a ph

probe. Also, you need to have a gastric emptying test done to check

for the delayed stomach emptying. Then I would seriously consider

the tube feedings. You can start out with a naso-gastric tube to

see how it works before you put him in surgery for a gastrostomy

tube. Forsyth would be a good resource for that info.

Please keep us posted. I'm not trying to scare you, but I have seen

so many tiny RSS babies whose parents fret over every calorie and

ounce. The tube feedings relieve that pressure and everyone is so

much happier.

By the way, eventually, Brady WILL eat. He just has to catch up and

feel stronger. He will probably need therapy (speech) to develop to

oral motor muscles, but that is easy enough to do. The important

thing right now is to get him to gain weight and get strong.

Jodi

[Guest guest]

Hi ,

I just wanted to second Jody's opinion here. You don't mention how much

Brady weighed at birth, but to me, 6# sounds small to me too. My grandson,

, who is considered severely underweight, was 7#4oz at 5 months of

age. It was about this age that we started to have real problems with his

feedings, and his weight gain came to a complete halt!

I, also, agree with Jodi, that I would have a pH probe run to check for

reflux. Does he arch his back a lot, or resist sitting upright on your lap?

Does he ever look like he's trying to chew food? We thought that was

just copying us, and found out that this can be a sign of reflux. I would,

also, ask to have a delayed gastric emptying study done, to make sure that

his stomach is emptying quickly enough for him to be able to eat the correct

amounts. Does his tummy ever look bloated or distended ? Does his tummy ever

feel hard? This can be mistaken for gas, when it's really formula. Does he

spit up a lot?

You don't mention what type, or calorie level of formula you have Brady

on. There are many different types of formula, and some are easier to digest

than others. You can take his formula up to 30kcal.oz without hurting him,

and I would suggest asking you Drs about this.

The Drs at the hospital that went to, didn't understand RSS or

it's many complications, and ended up charging his mom with neglect. This

led us to this site, and Dr H, and in Sept had the g-tube surgery.

Again, I can second Jodi on what a god-send this surgery was. B's mom was

very afraid to have this done, but it really has taken the pressure off of

us, because we no longer have to force him to eat. And it's not as terrible

as you imagine in your mind.

If you have more questions, please feel free to email me anytime, either

on site or in private, at pcpets@... I would love to help in any

way I can!

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Dear :

I am grandmother to Alyssa, daughter of Dayna. Lyssa was 2lbs. 8 oz. at birth

and if my memory is still intact LOL, at five months she was not quite that

heavy. My daughter will correct me if I'm wrong, but while all other babies

were gaining more than a pound per month, we were happy if Alyssa gained half

that. She is fifteen months, weighs 13.6 and is still in 3-6 month clothing,

sometimes 6-9. As long as she isn't losing she is maintaining! Dayna has a

folder at the site with things she has used for pumping calories. Good luck.

Donna,

Grandmother to Alyssa

Brady faliure to thrive

Hi, I don't post messages very often about my son Brady but something

has the doctors and I very stumped.

Brady is not gaining any weight and he is 5 months old. He weighs 6

pounds. Brady gets weighed one time a week sometimes as many as three

times per week. He stays at one weight or else he loses a whole

ounce. I am very afraid that if he doesn't start growing and gaining

weight he is going to die. If any one out there know what I can try

that maybe worked for their baby with RSS please let me know. I am

willing to try anything at this point.

mom of Brady Lee

[Guest guest]

Hi Donna,

Alyssa and must be close to the same growth curve! is 13

months, weighs 11#8oz, is wearing 0-3 month clothes and some 3-6m. With his

GT we don't have to worry about him eating, and right now he does nothing to

speak of orally. Isn't it nice to know that when you pay $20+ it's going to

get some use! LOL

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

,

Hi , I agree with Jodi. Please get a few more things checked out. Janelle

was failure to thrive and when the doc wrote it as a Dx I was so upset

because she was so happy I was like can't you see she's thriving but yet she

wasn't growing or doing any catch-up growth. It was just hard to hear (or

read) Good luck.

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

" magicrss@...>

Reply-To: RSS-Support

Date: Fri, 07 Feb 2003 16:54:26 -0000

To: RSS-Support

Subject: Re: Brady faliure to thrive

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Fri, 7 Feb 2003 11:10:13 -0600

,

So many of us have been in your shoes! It is not unusual for an RSS

baby to be diagnosed as failure to thrive. But, I do have to

disagree with some of the responses you have received. I think that

6 pounds at 5 months is too low and Brady should be watched for low

blood sugar and ketones.

Has anyone talked to you about tube feedings? With tube feedings,

you can get Brady to " eat " even if he does not want to. He can be

on continuous feeds or bolus feeds, depending on whether or not he

has reflux and/or delayed gastric emptying. The advantage to the

tube feedings is that it takes the pressure off of you. You know he

is getting what he needs to gain weight and grow. He is too young

to try Periactin. That is not usually tried until the baby is

closer to two years, although there are exceptions.

If your doctor has not already done so, you should consider asking

for an upper GI series to be done to check for reflux, or a ph

probe. Also, you need to have a gastric emptying test done to check

for the delayed stomach emptying. Then I would seriously consider

the tube feedings. You can start out with a naso-gastric tube to

see how it works before you put him in surgery for a gastrostomy

tube. Forsyth would be a good resource for that info.

Please keep us posted. I'm not trying to scare you, but I have seen

so many tiny RSS babies whose parents fret over every calorie and

ounce. The tube feedings relieve that pressure and everyone is so

much happier.

By the way, eventually, Brady WILL eat. He just has to catch up and

feel stronger. He will probably need therapy (speech) to develop to

oral motor muscles, but that is easy enough to do. The important

thing right now is to get him to gain weight and get strong.

Jodi

[Guest guest]

,

I know my mom Donna has already posted but I thought i'd put in my own two

cents. Alyssa was at 4lbs 12oz at her 5 month check up. From 2 lbs 8oz

this is an appropriate gain (or so we were told!). In it's self wieghing

six pounds in my situation was not alarming. That said, I don't know

Brady's birth weight.

Right now, we are trying to maximize caloric intake to prevent an NG or G

Tube for Alyssa. Remember, if Brady won't or can't eat orally, medical

science can get the food into him another way!!

Addititonally, as Pat mentioned formula's come in varying degrees of

calories/ounce. The average formula is only 20 cal/oz. Alyssa is on

Neosure (22 cal/oz) concentrated to 24 cal/oz. There are many other

formulas out there that go up to 30.

What was Bradys birthweight and what formula is he on? You've come to a

great place and it is full of education and support!!

Dayna, Mom to Alyssa, 15 months, 13lbs 6oz, 28 1/2 in

Brady faliure to thrive

> Hi, I don't post messages very often about my son Brady but something

> has the doctors and I very stumped.

>

> Brady is not gaining any weight and he is 5 months old. He weighs 6

> pounds. Brady gets weighed one time a week sometimes as many as three

> times per week. He stays at one weight or else he loses a whole

> ounce. I am very afraid that if he doesn't start growing and gaining

> weight he is going to die. If any one out there know what I can try

> that maybe worked for their baby with RSS please let me know. I am

> willing to try anything at this point.

>

> mom of Brady Lee

>

>

>

>

>

>

[Guest guest]

Hi Dayna,

your email is concise, informative, and reassuring, all at once. I wish

i could learn to write like you! LOL and I admire the fact that although you

are trying to avoid an NG or GT you still mention that these are other

options!

With 's situation, we just couldn't get enough food into to him,

and the more we tried, the worse his reflux got. When he learned to

associate the pain of reflux with the bottle, the options ran out. With the

GT, we no longer have to worry about 's tendency to go hypo-g in no

time flat. , who had also, learned to associate our holding him, with

that darn bottle and the pain, now loves to be held. It was all worth it!

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Pat,

Thank you for the nice compliment! We have been lucky not to have a problem

with reflux. I can't imagine the compounding problem it must create! I

admire those of you who handle a tube so well. No one wants their child or

grandchild to have to go through any surgery. BUT you do what you have to

do, right!?

Dayna, Mom to Alyssa

Re: Brady faliure to thrive

> Hi Dayna,

> your email is concise, informative, and reassuring, all at once. I

wish

> i could learn to write like you! LOL and I admire the fact that although

you

> are trying to avoid an NG or GT you still mention that these are other

> options!

> With 's situation, we just couldn't get enough food into to

him,

> and the more we tried, the worse his reflux got. When he learned to

> associate the pain of reflux with the bottle, the options ran out. With

the

> GT, we no longer have to worry about 's tendency to go hypo-g in no

> time flat. , who had also, learned to associate our holding him,

with

> that darn bottle and the pain, now loves to be held. It was all worth it!

> Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

>

>

>

>

>

>

[Guest guest]

Pat:

I have often thought the same as I have read the posts about . I guess

if we want to make lemonade, our kids really do wear out their baby clothes!

Lyssa will be wearing many of the same things this spring as last, only this

year they really will fit her! I also know how discouraging it is to keep

their weight up. When Lyssa has been ill and lost 6 or 7 ounces in a week, it

takes more than a month to recoup that loss and now she has really slowed down.

However, her mom packs every calorie possible into what she takes. I think I

may be rambling. Later.

Donna (g-ma to Alyssa, RSS 15 months.

Re: Brady faliure to thrive

Hi Donna,

Alyssa and must be close to the same growth curve! is 13

months, weighs 11#8oz, is wearing 0-3 month clothes and some 3-6m. With his

GT we don't have to worry about him eating, and right now he does nothing to

speak of orally. Isn't it nice to know that when you pay $20+ it's going to

get some use! LOL

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

I AM SO SILLY SOMETIMES!!

Alyssa weighed 5LBS 12OZ NOT 4lbs 12oz. I hit the wrong number typing so

fast!!!!

Sorry for the wrong info!!

Dayna, Mom to Alyssa, 13lbs 6oz, 28 1/2in.

Brady faliure to thrive

>

>

> > Hi, I don't post messages very often about my son Brady but something

> > has the doctors and I very stumped.

> >

> > Brady is not gaining any weight and he is 5 months old. He weighs 6

> > pounds. Brady gets weighed one time a week sometimes as many as three

> > times per week. He stays at one weight or else he loses a whole

> > ounce. I am very afraid that if he doesn't start growing and gaining

> > weight he is going to die. If any one out there know what I can try

> > that maybe worked for their baby with RSS please let me know. I am

> > willing to try anything at this point.

> >

> > mom of Brady Lee

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi , Darcy gained weight reasonably well until he came home

from the hospital at 6 weeks (he was 3lb 11 full term) once he came

home he lost a lot of weight as he wasn't feeding well, and ended up

with a nasogastric tube in for a few months. He still only gained

small amounts, but he was getting plenty of food and still gaining.

At 5 months he was 3.5kg (nearly about 7.5lb)

{{HUGS}}

Steph

[Guest guest]

Hey Donna,

Rambling is allowed in the " Old Fogey's Club " ! HAHAHA All of 's

preemie clothes got a worn, many-washings, dingy look to them. And I

couldn't believe how expensive they were! Have you found any place that is

inexpensive, to get 0-3, or 3-6 months separates? I've tried Wal-mart,

K-mart, Target, etc... most of the discount stores, and still can't find

turtle neck onsies, or long sleeved shirts. And we have an old house, it can

be a bit drafty, so I've been trying to find sweaters or sweatshirts, and

can't. do they just think that babies don't get chilly?

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Hi Dayna,

Between 5-7 months, failed to gain anything, and actually lost 4

oz! He was hospitalized for malnutrition, and found to be catabolic by his

blood tests. for those who don't know what catabolic is, it means that

was utilizing his own muscle tissue to sustain his brain, basically

metabolizing himself. The picture of his on the site, is at 8 months old.

You can see how small he was. That was when feeding became almost

impossible. The Drs wanted him to have 3oz every 3 hours x 6 daily, or 2oz

every 2 hrs x 9 daily. We would work for 30 min just trying to get the

bottle in his mouth, then 30-60 min to get 2 oz down him, another 30 min

trying to get him not to spit up, and the whole process would have to start

all over! that was when it became apparent that would need a GT. It

wasn't an easy decision to make, but when it came down to having in

our lives with the GT, or not having , it wasn't really difficult

either.

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Have you checked any of the consignment stores for baby clothes. I have gotten

great deals there. Because the clothes are like new because " normal " kids out

grow them so quickly compared to our RSS kids.

Maloy

Re: Brady faliure to thrive

Hey Donna,

Rambling is allowed in the " Old Fogey's Club " ! HAHAHA All of 's

preemie clothes got a worn, many-washings, dingy look to them. And I

couldn't believe how expensive they were! Have you found any place that is

inexpensive, to get 0-3, or 3-6 months separates? I've tried Wal-mart,

K-mart, Target, etc... most of the discount stores, and still can't find

turtle neck onsies, or long sleeved shirts. And we have an old house, it can

be a bit drafty, so I've been trying to find sweaters or sweatshirts, and

can't. do they just think that babies don't get chilly?

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Pat.

I noticed Dayna posted her haunts for Lyssa's clothes. If you have TJ Maxx or

Target, some of their things run small. As far as turtlenecks.....I haven't

found them reasonable anywhere or in any size. I have a grandson 6mos and

18lbs.....I can't get used to it! Anyway, I can't find them for him either. I

think a lot of the problem is that snaps are difficult on turtlenecks and most

kids really fight putting them on.

Do you sew? Turtlenecks are really easy to make. If not , consignment shops

are really a great place; most of the preemie and small items are either new or

hardly used. Good luck. If you would like to e-mail me privately, I am

dmorris4@....

More Later

G-ma donna, to Alyssa

Re: Brady faliure to thrive

Hey Donna,

Rambling is allowed in the " Old Fogey's Club " ! HAHAHA All of 's

preemie clothes got a worn, many-washings, dingy look to them. And I

couldn't believe how expensive they were! Have you found any place that is

inexpensive, to get 0-3, or 3-6 months separates? I've tried Wal-mart,

K-mart, Target, etc... most of the discount stores, and still can't find

turtle neck onsies, or long sleeved shirts. And we have an old house, it can

be a bit drafty, so I've been trying to find sweaters or sweatshirts, and

can't. do they just think that babies don't get chilly?

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Pat,

You should check Old Navy, the clothes aren't always cheap but

when they have sales it can be!

Pattie

> Hey Donna,

> Rambling is allowed in the " Old Fogey's Club " ! HAHAHA All of

's

> preemie clothes got a worn, many-washings, dingy look to them. And

I

> couldn't believe how expensive they were! Have you found any place

that is

> inexpensive, to get 0-3, or 3-6 months separates? I've tried Wal-

mart,

> K-mart, Target, etc... most of the discount stores, and still

can't find

> turtle neck onsies, or long sleeved shirts. And we have an old

house, it can

> be a bit drafty, so I've been trying to find sweaters or

sweatshirts, and

> can't. do they just think that babies don't get chilly?

> Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Hi Pattie,

thanks for the tip! I ALWAYS shop sales! LOL Doesn't everyone? LOL

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Hi ,

My son Coby has RSS and he is a twin. They will be 4 months old on

Valentines Day. Coby was born at 36 wks and weighed 2.4 lbs. Up

until last week he was gaining weight very well. He is also weighed

every week. He weighs 7.14lbs. He is on a colic formula that is for

sensitive stomachs and he has rice cereal added to it for reflux, so

he gets about 27cals per ounce. He was up to eating 4ozs every 3

hours except at night and he sleeps all night. He has not had any

trouble with low blood sugar. Even when he had his surgery and his

MRI and went long spurts of time without eating.

However, last week he didn't gain any weight at all and now he is not

eating as much throughout the day. I am scared to death that we are

about to experience what everyone else talks about here. I too will

be looking into some of the idea's that have been passed on to you.

I really hate the thought of feeding tubes, but I guess we will do

what has to be done.

Best wishes to you and your family.

le mom to:

ShyeLynn 8, Brock 6, Coby (RSS) & Carlee almost 4 months

> Hi, I don't post messages very often about my son Brady but

something

> has the doctors and I very stumped.

>

> Brady is not gaining any weight and he is 5 months old. He weighs 6

> pounds. Brady gets weighed one time a week sometimes as many as

three

> times per week. He stays at one weight or else he loses a whole

> ounce. I am very afraid that if he doesn't start growing and

gaining

> weight he is going to die. If any one out there know what I can

try

> that maybe worked for their baby with RSS please let me know. I am

> willing to try anything at this point.

>

> mom of Brady Lee

[Guest guest]

Pat,

It's still very cold outside, but unfortunately, the stores are putting out

their spring line so that means tshirts and cropped pants! Don't you just love

retail? You may catch a few things on the clearance racks. I know that I've seen

onesie turtlenecks and long sleeves at Target, but they may be all cleared out

by now.

Re: Brady faliure to thrive

Hey Donna,

Rambling is allowed in the " Old Fogey's Club " ! HAHAHA All of 's

preemie clothes got a worn, many-washings, dingy look to them. And I

couldn't believe how expensive they were! Have you found any place that is

inexpensive, to get 0-3, or 3-6 months separates? I've tried Wal-mart,

K-mart, Target, etc... most of the discount stores, and still can't find

turtle neck onsies, or long sleeved shirts. And we have an old house, it can

be a bit drafty, so I've been trying to find sweaters or sweatshirts, and

can't. do they just think that babies don't get chilly?

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Pat,

Just saw your e-mail and thought I would suggest H&M,Daffy's and yes, the Gap.

They usually have older looking small clothes. Sometimes, Gymboree and

Children's Place have them too.

(mom to Jonah)

Re: Brady faliure to thrive

Pat,

You should check Old Navy, the clothes aren't always cheap but

when they have sales it can be!

Pattie

> Hey Donna,

> Rambling is allowed in the " Old Fogey's Club " ! HAHAHA All of

's

> preemie clothes got a worn, many-washings, dingy look to them. And

I

> couldn't believe how expensive they were! Have you found any place

that is

> inexpensive, to get 0-3, or 3-6 months separates? I've tried Wal-

mart,

> K-mart, Target, etc... most of the discount stores, and still

can't find

> turtle neck onsies, or long sleeved shirts. And we have an old

house, it can

> be a bit drafty, so I've been trying to find sweaters or

sweatshirts, and

> can't. do they just think that babies don't get chilly?

> Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)

[Guest guest]

Hi ,

Thanks for the suggestions. I really have to get out and look around

again. I haven't been out much since Christmas.

Pat (g-ma to , RSS, 13 months, 11# 8oz, 24.75 " , GT)