Feeding problems & RSS kids & the library

[Guest guest]

I want to make sure that I clarify something from an email posting I

just read. There is no literature that shows that an RSS child's

feeding problems go away after the first couple of years. What

studies have shown is that there is a combination of two things:

one, for some reason it appears that these kids need MORE calories

than the average child to grow. (This is why we always tell parents

not to listen when a doctor tells you " your child is eating the

appropriate number of calories for a child his age. " - just like an

RSS child is now considered to be " Growth Hormone insufficient " -

same goes with the calories. THey need MORE growth hormone to grow

than the average child, and MORE calories to grow than the average

child). It is also thought that the RSS child's seratonin levels

are off. I normally do NOT copy and paste MAGIC documents into the

listserve, as they are supposed to be for MAGIC members only, but in

this case I am, simply because it is important and I can not explain

this without using a doctor's words.

" Seratonin is a messenger that the brain uses to control its eating

center and there are seratonin receptors in the eating center. For

most people, the control of the eating center is less than ideal and

we eat too much. These receptors are stimulated, (on), when

seratonin molecules sits on them. The stimulated receptors switch

the brain to the " stop-eating mode " . Diet pills act by keeping the

brain in the " stop-eating mode " . These receptors are unstimulated,

(off), when seratonin is not sitting on them. Cyproheptadine

(Periactin) acts by not allowing, blocking, seratonin from getting

to these receptors. This keeps the brain in the " eat mode " . Many

RSS children appear to send too much seratonin to this receptor

system. In most, this abnormality responds very well to

cyproheptadine. "

The above was written specifically with regards to why Periactin

(cyproheptadine) works so well on RSS and SGA kids, but is useful

here.

Add to this need the gut dysmotility issues that RSS and SGA

children have and now it is a greater problem. If a child has

untreated reflux, they learn " not " to want to eat, or to eat smaller

amounts. If the child is born with sensory issues.... or has oral

muscular issues, etc. -- all these things inhibit feeding.

But as so many of us with other children that are non-RSS, most

toddlers do not eat!!!! But we don't panic when they don't eat,

because they can survive on little. But the RSS and SGA child can

not. They need MORE calories.

Inga - your thoughts here? When I met Inga's son, Tim, he was 7

years old and 21 pounds. He was SOOO thin - I truly thought he

would fly away if a strong wind caught him. And being so thin can

also be a health risk if a bad flu came along, etc. From my memory,

Inga was strongly against a feeding tube for a long time. When Tim

finally had one put in, and began getting a significantly larger

amount of calories, bam, his weight took off. Inga also combines

this with a lot of research into homeopathic options as well, right

Inga?

Hope this clarifies things. We have found that once an RSS child

enters puberty, that a change does occur, and suddenly the weight

issue becomes the OPPOSITE of underweight -- now we are dealing with

the overweight possibility. Absolutely ironic to me! I think that

the person who wrote is somewhat correct in that as a child becomes

4 or 5, they have a better understanding that they " should " eat

(even if they don't feel like it), and they often will do so more

willingly. But it usually still isn't enough to gain weight

substantially. The infant and toddler are clueless, and just do

what their body is telling them, which is that they shouldn't need

to eat.... THis is just my personal thoughts, though. No published

info on this latter part.

I better explain something else, too. There are so many of you that

are new. My name is Salem, and I am the co-division

consultant for the MAGIC FOundation's RSS/SGA division. It is my

job (albeit volunteer) to know as much about RSS as possible; to

speak to the physicians; to write documents; create the convention;

etc. I am NOT a doctor. I have NO medical training -- beyond being

a ski patrolman for a couple years... HA!

I will only post things that have been published in a medical

journal article. If it is " theory " I will try and use that word.

If it is my belief based on my talking with or meeting oh so many

RSS families over the years, I will usually remember to write " it is

my belief... " or " my anecdotal evidence has shown... "

The internet is a wonderful thing, but a frightening thing as well.

Because someone like me could be writing things as if they are fact,

you believe it, and I could be some wacko!!! (I promise you that I

am not). But always be cautious about what you read on the

internet. I encourage everyone with an RSS child to read the

published medical journal articles that are out there on RSS. You

can do your own bio-medical library research and get copies yourself

if you are not a member of MAGIC. Or use MAGIC -- we have almost

every article on RSS (with the exception of genetic ones, they are

so complex and so numerous it didn't make sense). I think we are up

to about 60. We have a " log " of the articles, and I added a right

hand column with a brief description of each article, to make it

easier for us parents. This way you can scan the description and

see if it makes sense for you to get the article. Then you simply

tell MAGIC which ID numbers you want, and they mail them to you free.

Hope this helps!!! Salem

[Guest guest]

---, my understanding from the reading I've done and from

lectures I've been to at conventions is that RSS children are not

growth hormone deficient.Have recent studies shown this not to be

the case? If it is my posting that you are referring to in relation

to RSS children's feeding problems going away after the first couple

of years ...if only!!! We managed to free Imogen of the tube when

she was 3 and a half...she is now 6 and running around and enjoying

her childhood...if there is a price to pay for this we will deal

with it when the time comes.I just feel that new parents need to

know that there is another way than the tube and gh route. Is that

not fair enough? Eileen In RSS-Support , " magicrss "

wrote:

> I want to make sure that I clarify something from an email posting

I

> just read. There is no literature that shows that an RSS child's

> feeding problems go away after the first couple of years. What

> studies have shown is that there is a combination of two things:

> one, for some reason it appears that these kids need MORE calories

> than the average child to grow. (This is why we always tell

parents

> not to listen when a doctor tells you " your child is eating the

> appropriate number of calories for a child his age. " - just like

an

> RSS child is now considered to be " Growth Hormone insufficient " -

> same goes with the calories. THey need MORE growth hormone to

grow

> than the average child, and MORE calories to grow than the average

> child). It is also thought that the RSS child's seratonin levels

> are off. I normally do NOT copy and paste MAGIC documents into

the

> listserve, as they are supposed to be for MAGIC members only, but

in

> this case I am, simply because it is important and I can not

explain

> this without using a doctor's words.

>

> " Seratonin is a messenger that the brain uses to control its

eating

> center and there are seratonin receptors in the eating center.

For

> most people, the control of the eating center is less than ideal

and

> we eat too much. These receptors are stimulated, (on), when

> seratonin molecules sits on them. The stimulated receptors switch

> the brain to the " stop-eating mode " . Diet pills act by keeping

the

> brain in the " stop-eating mode " . These receptors are unstimulated,

> (off), when seratonin is not sitting on them. Cyproheptadine

> (Periactin) acts by not allowing, blocking, seratonin from getting

> to these receptors. This keeps the brain in the " eat mode " . Many

> RSS children appear to send too much seratonin to this receptor

> system. In most, this abnormality responds very well to

> cyproheptadine. "

>

> The above was written specifically with regards to why Periactin

> (cyproheptadine) works so well on RSS and SGA kids, but is useful

> here.

>

> Add to this need the gut dysmotility issues that RSS and SGA

> children have and now it is a greater problem. If a child has

> untreated reflux, they learn " not " to want to eat, or to eat

smaller

> amounts. If the child is born with sensory issues.... or has oral

> muscular issues, etc. -- all these things inhibit feeding.

>

> But as so many of us with other children that are non-RSS, most

> toddlers do not eat!!!! But we don't panic when they don't eat,

> because they can survive on little. But the RSS and SGA child can

> not. They need MORE calories.

>

> Inga - your thoughts here? When I met Inga's son, Tim, he was 7

> years old and 21 pounds. He was SOOO thin - I truly thought he

> would fly away if a strong wind caught him. And being so thin can

> also be a health risk if a bad flu came along, etc. From my

memory,

> Inga was strongly against a feeding tube for a long time. When

Tim

> finally had one put in, and began getting a significantly larger

> amount of calories, bam, his weight took off. Inga also combines

> this with a lot of research into homeopathic options as well,

right

> Inga?

>

> Hope this clarifies things. We have found that once an RSS child

> enters puberty, that a change does occur, and suddenly the weight

> issue becomes the OPPOSITE of underweight -- now we are dealing

with

> the overweight possibility. Absolutely ironic to me! I think

that

> the person who wrote is somewhat correct in that as a child

becomes

> 4 or 5, they have a better understanding that they " should " eat

> (even if they don't feel like it), and they often will do so more

> willingly. But it usually still isn't enough to gain weight

> substantially. The infant and toddler are clueless, and just do

> what their body is telling them, which is that they shouldn't need

> to eat.... THis is just my personal thoughts, though. No

published

> info on this latter part.

>

> I better explain something else, too. There are so many of you

that

> are new. My name is Salem, and I am the co-division

> consultant for the MAGIC FOundation's RSS/SGA division. It is my

> job (albeit volunteer) to know as much about RSS as possible; to

> speak to the physicians; to write documents; create the

convention;

> etc. I am NOT a doctor. I have NO medical training -- beyond

being

> a ski patrolman for a couple years... HA!

>

> I will only post things that have been published in a medical

> journal article. If it is " theory " I will try and use that word.

> If it is my belief based on my talking with or meeting oh so many

> RSS families over the years, I will usually remember to write " it

is

> my belief... " or " my anecdotal evidence has shown... "

>

> The internet is a wonderful thing, but a frightening thing as

well.

> Because someone like me could be writing things as if they are

fact,

> you believe it, and I could be some wacko!!! (I promise you that

I

> am not). But always be cautious about what you read on the

> internet. I encourage everyone with an RSS child to read the

> published medical journal articles that are out there on RSS. You

> can do your own bio-medical library research and get copies

yourself

> if you are not a member of MAGIC. Or use MAGIC -- we have almost

> every article on RSS (with the exception of genetic ones, they are

> so complex and so numerous it didn't make sense). I think we are

up

> to about 60. We have a " log " of the articles, and I added a right

> hand column with a brief description of each article, to make it

> easier for us parents. This way you can scan the description and

> see if it makes sense for you to get the article. Then you simply

> tell MAGIC which ID numbers you want, and they mail them to you

free.

>

> Hope this helps!!! Salem

[Guest guest]

Eileen - I absolutely agree that there are other ways than GH and

tube feedings. Well, let me rephrase that. I think that parents

have a choice of whether they want to increase their child's final

adult height or not. If they do, GH is the only proven way. If

not, they don't. I never pass judgment on a parent who chooses one

way or another. In fact, I just had a phone conversation with an

RSS mom where I recommended against GH for her daughter (primarily

because her target height was only 3.5 inches taller than what she

was tracking to -- and doing GH injections for several years to gain

2 inches maybe for a girl, when their insurance had already said no,

would not be worth it for me!).

Tube feedings are a different story. I have never met a family who

has willingly jumped at getting a tube put in. THey are almost

always last resort (often times, waiting too long). I don't think

most doctors would recommend a tube if they hadn't already tried

other things. I remember when we went to NY for the first time, we

were thinking " tube " and Dr. H said NO WAY!!! We hadn't tried a

diet heavy in complex carbos (she gained 3 pounds right away), and

then when she flattened in weight again, we started the Periactin --

and she gained again.

So I agree with you that parents have to know that there are other

routes. One reason why we chose to have a physician experienced in

alternative medicine speak at the convention last year! Parents

need to know ALL of their options.

With regards to the gh deficient, I have to go back and look at my

posting. I thought I had written that RSS children are GH

insufficent. Most do not test deficient. But here is what two

recent studies have written (they have these great graphs but I

can't show them ), " ... a high proportion of such cases

(RSS/short SGA) produce insufficient endogenous GH and IGF-1 to

achieve the level of catch-up growth needed to return to normal

growth. " And then they go on to show these GH-IGF-1 axis, and the

medical lingo is way too over my head. Dr. Stanhope, one of

the original big researches in RSS from England, came to the MAGIC

convention last summer, and he said that " unsufficient GH levels " is

the new coin term for RSS kids in the scientific community.

When you refer to the conventions you have been to about RSS

children, what conventions are these? Did you go to the one in

England by the Child growth Foundation?

Honestly, Eileen, I appreciate your point of view. That is why we

have the listserve, so please don't think I don't like or appreciate

your thoughts. It is always good to have new people on the

listserve, and different thoughts and opinions!

(we can take this offline if you want to email me at magicrss@

mindspring.com -- I can't read your full email address from the

listserve thing though)

> > I want to make sure that I clarify something from an email

posting

> I

> > just read. There is no literature that shows that an RSS

child's

> > feeding problems go away after the first couple of years. What

> > studies have shown is that there is a combination of two

things:

> > one, for some reason it appears that these kids need MORE

calories

> > than the average child to grow. (This is why we always tell

> parents

> > not to listen when a doctor tells you " your child is eating the

> > appropriate number of calories for a child his age. " - just

like

> an

> > RSS child is now considered to be " Growth Hormone insufficient " -

> > same goes with the calories. THey need MORE growth hormone to

> grow

> > than the average child, and MORE calories to grow than the

average

> > child). It is also thought that the RSS child's seratonin

levels

> > are off. I normally do NOT copy and paste MAGIC documents into

> the

> > listserve, as they are supposed to be for MAGIC members only,

but

> in

> > this case I am, simply because it is important and I can not

> explain

> > this without using a doctor's words.

> >

> > " Seratonin is a messenger that the brain uses to control its

> eating

> > center and there are seratonin receptors in the eating center.

> For

> > most people, the control of the eating center is less than ideal

> and

> > we eat too much. These receptors are stimulated, (on), when

> > seratonin molecules sits on them. The stimulated receptors

switch

> > the brain to the " stop-eating mode " . Diet pills act by keeping

> the

> > brain in the " stop-eating mode " . These receptors are

unstimulated,

> > (off), when seratonin is not sitting on them. Cyproheptadine

> > (Periactin) acts by not allowing, blocking, seratonin from

getting

> > to these receptors. This keeps the brain in the " eat mode " .

Many

> > RSS children appear to send too much seratonin to this receptor

> > system. In most, this abnormality responds very well to

> > cyproheptadine. "

> >

> > The above was written specifically with regards to why Periactin

> > (cyproheptadine) works so well on RSS and SGA kids, but is

useful

> > here.

> >

> > Add to this need the gut dysmotility issues that RSS and SGA

> > children have and now it is a greater problem. If a child has

> > untreated reflux, they learn " not " to want to eat, or to eat

> smaller

> > amounts. If the child is born with sensory issues.... or has

oral

> > muscular issues, etc. -- all these things inhibit feeding.

> >

> > But as so many of us with other children that are non-RSS, most

> > toddlers do not eat!!!! But we don't panic when they don't eat,

> > because they can survive on little. But the RSS and SGA child

can

> > not. They need MORE calories.

> >

> > Inga - your thoughts here? When I met Inga's son, Tim, he was 7

> > years old and 21 pounds. He was SOOO thin - I truly thought he

> > would fly away if a strong wind caught him. And being so thin

can

> > also be a health risk if a bad flu came along, etc. From my

> memory,

> > Inga was strongly against a feeding tube for a long time. When

> Tim

> > finally had one put in, and began getting a significantly larger

> > amount of calories, bam, his weight took off. Inga also

combines

> > this with a lot of research into homeopathic options as well,

> right

> > Inga?

> >

> > Hope this clarifies things. We have found that once an RSS

child

> > enters puberty, that a change does occur, and suddenly the

weight

> > issue becomes the OPPOSITE of underweight -- now we are dealing

> with

> > the overweight possibility. Absolutely ironic to me! I think

> that

> > the person who wrote is somewhat correct in that as a child

> becomes

> > 4 or 5, they have a better understanding that they " should " eat

> > (even if they don't feel like it), and they often will do so

more

> > willingly. But it usually still isn't enough to gain weight

> > substantially. The infant and toddler are clueless, and just do

> > what their body is telling them, which is that they shouldn't

need

> > to eat.... THis is just my personal thoughts, though. No

> published

> > info on this latter part.

> >

> > I better explain something else, too. There are so many of you

> that

> > are new. My name is Salem, and I am the co-division

> > consultant for the MAGIC FOundation's RSS/SGA division. It is

my

> > job (albeit volunteer) to know as much about RSS as possible; to

> > speak to the physicians; to write documents; create the

> convention;

> > etc. I am NOT a doctor. I have NO medical training -- beyond

> being

> > a ski patrolman for a couple years... HA!

> >

> > I will only post things that have been published in a medical

> > journal article. If it is " theory " I will try and use that

word.

> > If it is my belief based on my talking with or meeting oh so

many

> > RSS families over the years, I will usually remember to

write " it

> is

> > my belief... " or " my anecdotal evidence has shown... "

> >

> > The internet is a wonderful thing, but a frightening thing as

> well.

> > Because someone like me could be writing things as if they are

> fact,

> > you believe it, and I could be some wacko!!! (I promise you

that

> I

> > am not). But always be cautious about what you read on the

> > internet. I encourage everyone with an RSS child to read the

> > published medical journal articles that are out there on RSS.

You

> > can do your own bio-medical library research and get copies

> yourself

> > if you are not a member of MAGIC. Or use MAGIC -- we have

almost

> > every article on RSS (with the exception of genetic ones, they

are

> > so complex and so numerous it didn't make sense). I think we

are

> up

> > to about 60. We have a " log " of the articles, and I added a

right

> > hand column with a brief description of each article, to make it

> > easier for us parents. This way you can scan the description

and

> > see if it makes sense for you to get the article. Then you

simply

> > tell MAGIC which ID numbers you want, and they mail them to you

> free.

> >

> > Hope this helps!!! Salem

[Guest guest]

I would appreciate if you and Eileen did not take this discussion off

the group, as I am very interested in furthering my understanding in

this area, and interested in hearing where Eileen got her evidence

that GH doesn't impact on final height. I, too, have been advised by

my endo that there is no evidence to show that GH has any effect of

final adult height, and it does seem to be surprising that these

studies have been published over the last five years or so, since GH

wasn't fully approved for this use until more recently. I will need

to read all the articles, obviously, but like many are short of time,

so a precis, here, would be useful. Anyway, like everyone here, I

want to understand as much as I can and to hear all sides of the

arguments.

Cheers

Barbara