Re: Lack of Hunger

[Guest guest]

Hi Conny. I just read your post. Has been seen by Dr.

Harbison? Is she the one that said he didn't have RSS? He sounds

like so many of these kids that don't want to eat. has also

been tested for reflux. Those came back showing he doesn't have it,

but I am not totally convinced of that. Especially when 's GI

doctor tells us there is not one real good test for reflux! I am

like you with the whole water thing. can't even tolerate the

amount of formula Dr.H wants him to have, and when I go and add more

of anything to him, he can't take it. So, I just have to know that

he is going to lose some of his formula from throwing up because I am

having to give him prune juice and extra water because he is

constipated, and maybe even a little dehydrated since he has dry lips

all the time. It just seems lie a never ending battle with our

kids. They can't win. They need extra food to grow, which they

can't tolerate and end up throwing up. Due to all the food they get,

they get constipated and all backed up because we keep cramming the

food in. Then because of constipation they need extra water, prune

juice, medicine or something to help them have BM's, which increases

the fullness in them. They throw up again. It is neverending! It

is like one big circle. Their poor little stomachs don't seem to get

a break! No wonder none of them want to eat anything. I just wish

someone could figure out what is really happening inside these

precious little bodies!

Jodi R.

[Guest guest]

Dear Jodi R.

I am so impressed that has reached 14 pounds! Who'd a thunk

it?

has not been seen by Dr. Harbison, unfortunately. He was

seen by a geneticist last month who just dismissed the whole idea

because he said that is too big. The unfortunate part is

that he doesn't know enough about RSS. I was hoping to use the

diagnoses to get Medicaid to pay for to see Dr. H. But, if

this doctor says he doesn't have it and 'he will eat when he gets

hungry'....I have no ammo to fight them with. He is seeing an

endocrinologist this next week and I am hoping for a more satisfying

answer than we got before. Fortunately, is not so terrible

affected like . He is small and thin, but not as bad as some

here. Thanks for caring. You are such an asset to this group.

Conny, 's great aunt

> Hi Conny. I just read your post. Has been seen by Dr.

> Harbison? Is she the one that said he didn't have RSS? He sounds

> like so many of these kids that don't want to eat. has also

> been tested for reflux. Those came back showing he doesn't have it,

> but I am not totally convinced of that. Especially when 's

GI

> doctor tells us there is not one real good test for reflux! I am

> like you with the whole water thing. can't even tolerate

the

> amount of formula Dr.H wants him to have, and when I go and add

more

> of anything to him, he can't take it. So, I just have to know that

> he is going to lose some of his formula from throwing up because I

am

> having to give him prune juice and extra water because he is

> constipated, and maybe even a little dehydrated since he has dry

lips

> all the time. It just seems lie a never ending battle with our

> kids. They can't win. They need extra food to grow, which they

> can't tolerate and end up throwing up. Due to all the food they

get,

> they get constipated and all backed up because we keep cramming the

> food in. Then because of constipation they need extra water, prune

> juice, medicine or something to help them have BM's, which

increases

> the fullness in them. They throw up again. It is neverending! It

> is like one big circle. Their poor little stomachs don't seem to

get

> a break! No wonder none of them want to eat anything. I just wish

> someone could figure out what is really happening inside these

> precious little bodies!

>

> Jodi R.

[Guest guest]

If was born under 5lbs and/or 17.5 " in length, and has not

caught up to the normal curve yet, then regardless of the RSS issue,

he is small-for-gestational-age (SGA). And all of the appetite and

risk issues for SGA are the same as RSS. (RSS is a subgroup of SGA).

How did the GI determine that did not have reflux. Please

tell me that they did a ph probe and not just an x-ray....

Has been evaluated for delayed gastric emptying? Many many

of the SGA children have this -- and this means that the food stays

in his tummy far too long, making him think he is full. Sometimes I

wonder if this is " biological " -- part of the intrauterine thing --

the body making due with less, ya know?

The GET (gastric emptying test) is pretty non-invasive. He drinks a

bunch of milk, and then the hard part is that they have to strap him

down for 90 minutes while a machine takes pictures. They should

have a VCR/television there, and the child can watch TV. My

daughter watched a movie but she is older.

> Although we have been told that is not RSS, I am not

totally

> convinced and even if he isn't, who can tell the difference?

> does not have any reflux, according to his gastroenterologist.

And

> yet, he is never truly hungry. Even when he was a newborn, he

would

> wake and fuss a little and if you fed him, he might eat a bit, but

if

> you didn't, he might just go back to sleep. He does not seem to

> suffer from food aversion, like some of the kids, but he often

takes

> a bite and then just allows it to fall out of his mouth,

especially

> if it is unfamiliar to him, or it is fruit, or it is vegetables,

or

> it is Thursday, or the sun is shining. LOL Anyway, he is finally

> self-feeding and that has improved things a bit, but he still does

> not have anywhere near a 'normal' appetite for a busy, active

almost

> 22 month old boy. He usually eats for only about 5 minutes and if

we

> are lucky, he will eat a couple of tablespoons of food one or two

> times a day. We are still giving him a couple of bottles a day,

in

> the hopes that this will keep him from starving. I don't know

what

> will happen when we stop that. This will definitely be a topic of

> conversation with the endocrinologist next week. I am going to try

to

> get him to drink a bit more water and see if that helps with the

> strong urine. We haven't ever given him much water for fear it

would

> displace something with calories in his diet. But, it sure can't

be

> good for him to be dehydrated.

>

> Conny, 's great aunt

[Guest guest]

Conny,

I wouldn't worry about the water displacing calories in your son's diet. I

used to give my son water. It usually helped his appetite.

[Guest guest]

Dear ,

was 5lbs 6ozs and 17.5 inches. He has not had any catch-up

growth and so he is still on the 6th percentile for height and below

the chart for weight. So, I guess he is borderline SGA.

To determine whether he had reflux, the gasto people put him to sleep

and scoped him. They even gave me a photo which showed that all of

his tissues in his stomach and esophagus were pink and healthy

looking. They said that if he had reflux, his esophagus would have

shown signs of irritation. The doctor said that a ph probe is a

miserable test to do on a baby and if it showed anything, she would

just have to scope him anyway....so might as well just do that.

He has not been evaluated for delayed gastric emptying. I think that

because he doesn't have a 'diagnosis' beyond failure to thrive and

because the idiot geneticist thinks he is just a picky eater....I am

not getting any response. They just keep saying....Well he isn't

terribly sick. He isn't in the hospital a lot. He is running around

like any kid. He isn't as skinny as some of the kids we see here at

Children's. Oh, well.

I am so frustrated with this response, I could just scream. I know

he isn't dying, but he isn't much growing either. His sister, who is

twelve months younger than him is just about to pass him up. That is

OK, but she isn't even a year old, yet. This is just not right for

him. If there was nothing to be done, we could accept all of this.

I have my beautiful daughter who has achondroplasia and is 4'3 " and

we know how to cope with dwarfism, but this is different. This seems

like there are things that should be done, at least at some point,

and no one cares because he isn't bad enough off.

I am hoping the endocrinologist is better. But, either way, I am

focusing on trying to get to Chicago to see Dr. H.

Thank you for caring.

Conny, 's (and Kristel's) great-aunt

> > Although we have been told that is not RSS, I am not

> totally

> > convinced and even if he isn't, who can tell the difference?

>

> > does not have any reflux, according to his gastroenterologist.

> And

> > yet, he is never truly hungry. Even when he was a newborn, he

> would

> > wake and fuss a little and if you fed him, he might eat a bit,

but

> if

> > you didn't, he might just go back to sleep. He does not seem to

> > suffer from food aversion, like some of the kids, but he often

> takes

> > a bite and then just allows it to fall out of his mouth,

> especially

> > if it is unfamiliar to him, or it is fruit, or it is vegetables,

> or

> > it is Thursday, or the sun is shining. LOL Anyway, he is

finally

> > self-feeding and that has improved things a bit, but he still

does

> > not have anywhere near a 'normal' appetite for a busy, active

> almost

> > 22 month old boy. He usually eats for only about 5 minutes and

if

> we

> > are lucky, he will eat a couple of tablespoons of food one or two

> > times a day. We are still giving him a couple of bottles a day,

> in

> > the hopes that this will keep him from starving. I don't know

> what

> > will happen when we stop that. This will definitely be a topic

of

> > conversation with the endocrinologist next week. I am going to

try

> to

> > get him to drink a bit more water and see if that helps with the

> > strong urine. We haven't ever given him much water for fear it

> would

> > displace something with calories in his diet. But, it sure can't

> be

> > good for him to be dehydrated.

> >

> > Conny, 's great aunt