Re: Is it really RSS?

August 24, 2001

Hi ,

I read your description below.

As you have experienced, in 90% of the cases, there is no definitive

way to tell if a child has RSS. It is usually diagnosed by eliminating

all other possibilities. Many doctors just leave the diagnosis as

constititional growth delay or sga ( small for gestational age) but

this is inaccurate. The concern with this is the assumption that a

child will catch up. With RSS, this usually does not happen.

Your first geneticist may be right about the RSS but he is definitely

wrong about no treatment. As you have probably read, there is

a protocol that has been accepted by many (but not all) doctors. This

protocol is basically, 1). Increase weight with cyproheptadine or a

feeding tube ( or both), 2). Growth Hormone and if necessary 3). Delay

puberty.

Some on this list have been exploring homeopathic methods for

stimulating appetite and this may prove to be better than

cyproheptadine. Hopefully, some one more knowledgeable than me can

explain these methods.

As for the symptoms of RSS, night sweating is not a symptom. Many RSS

children are prone to hypoglycemia. It is the sweating fom

hypoglycemia that you may have observed. However, there are many other

things that can cause low blood sugar.

Also, I know it has been reported that the FDA has approved growth

hormone for sga children but I don't think there was an approval

specifically for RSS. RSS may have been included in the SGA category.

I think others may have more accurate info than I do on this.

Well, that is pretty much my Friday afternoon brain dump.

I hope it helps.

Ken M

> I am very confused now about whether my son has RSS. He was sent to

a

> pediatric genetecist at age 18 mo. because of his poor appetite,

> undescended testes (which were corrected), late-closing fontanel and

> wasn't walking. At the time, he was 15th percentile in height. The

> geneticist said he had RSS and that there wasn't any treatment other

> than physical therapy. We decided to forget about it when

> started walking at 19 mo. and our pediatrician consulted another

> geneticist who questioned the diagnosis.

>

> After that Joshie kept slipping off the curves until age 3, when he

> settled in at around 5th percentile in height and has stayed there.

His

> eating is quite a bit better but in the last 6 months, he didn't

gain

> any weight - at 4 1/2, he is 38 3/4 in and 30 lbs. He is thin,

though

> not frighteningly so. We did a bone scan recently and were told he

has

> delayed bone age (32 mo). Our pediatrician says this is

constitutional

> growth delay, and that he will have delayed puberty and will catch

up.

> My husband was small as a child and did have delayed puberty, but

was

> never this tiny. (FYI, my husband and I are both in the 75th

percentile

> now for height and are both thin).

>

> In coming back to this web site, I now see the excessive night

sweating

> is a symptom of RSS, something that used to have. I also see

the

> GHT has now been approved for RSS kids. We are going to start a

round

> of seeing a pediatric endocrinologist and perhaps another geneticist

> for a second opinion, but I am so confused. I would love to hear

from

> other parents with confusing diagnoses.

>

> (mother of , 8 1/2, and , 4 1/2 (RSS?)

August 24, 2001

Hi

I think my personal best advice to you, as one mom to another, is go back

and get second opinions. My son, had some good growth for awhile (the ages

don't match yours, but the same idea) but started to stall just under a year

of age. I think the bone age is a big indicator of the RSS " thing " . There is

something more than genetically he's " going to be small " . The poor appetite

thing we've been discussing a lot on the board recently and I guess you need

to figure how poor is poor. So poor you should be considering a feeding

tube? or poor in that he's finicky? Someone said (if memory serves it was

Maeve) that Dr. S. said most kids under the age of 4 are notoriously picky

eaters (RSS or not!!!!) that's a " kid " thing. So you do need to figure that

out.

Otherwise the other " signs " well, some kids have them (my son had

undescended testicles, now corrected too). RSS wasn't even mentioned to us

until a little after the age of 2. But then our endo. said " nothing can be

done " and didn't want me coming to see him again.

A few years went by and he retired and my ped. endo. said the " new " guy was

giving GH to short stature kids and I should get my butt down there. It took

another year or so to convince me, then get the insurance business going but

now we are on our way. Our first piece of paperwork that actually said " Adam

HAS RSS " was the one the endo wrote for the insurance company. Otherwise it

was always " probably, suspected " .

So times change, doctors change, you get one who is slightly more

knowledgeable than another. From where I sit, I think you should pursue this

avenue one more time. Just to make sure. No sense finding out in 10 years it

WAS RSS afterall but you can't do anything about it now.

Good luck. Hang around here with us. And let us know what you decide.

Oh one thing, the night sweats are not a symptom of RSS, but a possible

indicator of nocturnal hypoglycemia (low blood sugar). The tie is that our

children seem to suffer from hypoglycemia more often due to their small size

and small muscle tone.

Debby

Is it really RSS?

> I am very confused now about whether my son has RSS. He was sent to a

> pediatric genetecist at age 18 mo. because of his poor appetite,

> undescended testes (which were corrected), late-closing fontanel and

> wasn't walking. At the time, he was 15th percentile in height. The

> geneticist said he had RSS and that there wasn't any treatment other

> than physical therapy. We decided to forget about it when

> started walking at 19 mo. and our pediatrician consulted another

> geneticist who questioned the diagnosis.

>

> After that Joshie kept slipping off the curves until age 3, when he

> settled in at around 5th percentile in height and has stayed there. His

> eating is quite a bit better but in the last 6 months, he didn't gain

> any weight - at 4 1/2, he is 38 3/4 in and 30 lbs. He is thin, though

> not frighteningly so. We did a bone scan recently and were told he has

> delayed bone age (32 mo). Our pediatrician says this is constitutional

> growth delay, and that he will have delayed puberty and will catch up.

> My husband was small as a child and did have delayed puberty, but was

> never this tiny. (FYI, my husband and I are both in the 75th percentile

> now for height and are both thin).

>

> In coming back to this web site, I now see the excessive night sweating

> is a symptom of RSS, something that used to have. I also see the

> GHT has now been approved for RSS kids. We are going to start a round

> of seeing a pediatric endocrinologist and perhaps another geneticist

> for a second opinion, but I am so confused. I would love to hear from

> other parents with confusing diagnoses.

>

> (mother of , 8 1/2, and , 4 1/2 (RSS?)

>

August 25, 2001

,

I was just wondering how big was when he was born? Have you

checked out the pictures on this listserve. Many of these kids look

alike so you might see if he has some of the facial characteristics

like the other kids.

I know that it feels reassuring to get a diagnosis, but our doctor

once told us, even if he doesn't have RSS he is short and skinny and

will need the same treatment. My son Jonathon has been on growth

hormone since he was 3 and he is now 6 1/2. He was never anywhere on

the growth curve and most RSS kids are not. As a matter of fact, RSS

kids have their own curve below the bottom percentile. As for the

nightly head sweating, Jon had them as a younger kid but was never

hypoglycemic so I'm not sure what that means.

Lastly, where do you live?

Pattie

August 26, 2001

Dear Pattie,

was 7 lbs 5 oz. and 21 in. at birth. I have looked at the

pictures and he does look a bit like the other children, although I

would like to see a side-by-side comparison with skinny, non-RSS

children to see how distinctive this " look " is. has no assymtry,

although I know that is a characteristic of only a subset of the

children. He also has none of the digestive or reflux problems I have

seen described here. He does have fifth finger clindactyly, which I

have, too, and he has a cafe-au-lait spot just like my husband (we are

both on the tall side).

I live in Baltimore and am about to dive into seeing all the experts at

s Hopkins.

Thanks for your response!

(mother of , 4 1/2 (RSS?) and , 8)

> ,

>

> I was just wondering how big was when he was born? Have you

> checked out the pictures on this listserve. Many of these kids look

> alike so you might see if he has some of the facial characteristics

> like the other kids.

>

> I know that it feels reassuring to get a diagnosis, but our doctor

> once told us, even if he doesn't have RSS he is short and skinny and

> will need the same treatment. My son Jonathon has been on growth

> hormone since he was 3 and he is now 6 1/2. He was never anywhere on

> the growth curve and most RSS kids are not. As a matter of fact, RSS

> kids have their own curve below the bottom percentile. As for the

> nightly head sweating, Jon had them as a younger kid but was never

> hypoglycemic so I'm not sure what that means.

>

> Lastly, where do you live?

>

> Pattie

August 26, 2001

Hi !

We are actually in Baltimore right now visiting my brother in law (Actually,

in Elkridge).

Our son , I feel, does not look like many of the RSS kids on our

listserve, namely, he doesn't have the really small chin and thin mouth. Now

that he is 4.5, his features have evened out. His big forehead doesn't seem

as pronounced to me.

He was born 7lbs10oz and was 20 inches long.

He hovered at the 20th percentile, then 15th, until 6 months, and then

dropped off the curve.

He is now 4.5 (his birthday is 12/10) and has been on GHT for 1.5 years.

Dr.H. claims that he looks like an RSS child, but I think the fact that he

had good weight gain allowed his facial features to fill out.

Anyway, where in Baltimore are you?

Katy

cwolberg@... wrote:

> Dear Pattie,

>

> was 7 lbs 5 oz. and 21 in. at birth. I have looked at the

> pictures and he does look a bit like the other children, although I

> would like to see a side-by-side comparison with skinny, non-RSS

> children to see how distinctive this " look " is. has no assymtry,

> although I know that is a characteristic of only a subset of the

> children. He also has none of the digestive or reflux problems I have

> seen described here. He does have fifth finger clindactyly, which I

> have, too, and he has a cafe-au-lait spot just like my husband (we are

> both on the tall side).

>

> I live in Baltimore and am about to dive into seeing all the experts at

> s Hopkins.

>

> Thanks for your response!

>

> (mother of , 4 1/2 (RSS?) and , 8)

>

> > ,

> >

> > I was just wondering how big was when he was born? Have you

> > checked out the pictures on this listserve. Many of these kids look

> > alike so you might see if he has some of the facial characteristics

> > like the other kids.

> >

> > I know that it feels reassuring to get a diagnosis, but our doctor

> > once told us, even if he doesn't have RSS he is short and skinny and

> > will need the same treatment. My son Jonathon has been on growth

> > hormone since he was 3 and he is now 6 1/2. He was never anywhere on

> > the growth curve and most RSS kids are not. As a matter of fact, RSS

> > kids have their own curve below the bottom percentile. As for the

> > nightly head sweating, Jon had them as a younger kid but was never

> > hypoglycemic so I'm not sure what that means.

> >

> > Lastly, where do you live?

> >

> > Pattie

>