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Re: question about RSS Hi !

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,

My son is 7 1/2 years old, and when I first joined this group

I was convinced he had RSS. But we saw Dr. Harbison at convention

last year and she said, NO, he is SMall for Gestational Age without

catch up growth. RSS and SGA are very similar so we all hang out

together. If you search the archives or just lurk around a while

you'll learn a lot. Ask any question, someone will answer it.

For Matt's part, he has severe gastric reflux (which was 'silent' for

years), delayed gastric emptying, H. Pylori, no appetite and is on

growth hormone. I'll list his drugs in my signature so you can see

what he is doing now.

The last year has been tremendous in growth of height and weight, and

I am excited to see Dr. H to see what she thinks.

If there is anyway to get to convention in Chicago at the end of

July, it is well worth the effort!

Welcome to our group!

Beth H.

Mom to Matt 7 yrs, 49 pounds, (can't remember the height)

Growth Hormone, Periactin, Singulair, Prepulsid, Ritalin, Prilosec

> Hello, I am posting this again, since the first one has not been

> posted. I am in need of any help or info. I can get on RSS. My son

> has some issues going on that seem to me like it could be RSS. His

> geneticist did not feel this is what he had but I am still not

> convinced.

>

> Thank you

>

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Guest guest

Hi Beth, Thanks for your reply. My son has some of the symptons of

RSS but not all of them and Dr.'s do not think this is what it is.

My son was born over 7 lbs and over 19 " but started to slow down at

age 9 months. I doubt I can make it to the convention even though I

would like to. Kind of an expensive trip to take.

Thanks I hope I can hear what others think.

Thanks

> > Hello, I am posting this again, since the first one has not

been

> > posted. I am in need of any help or info. I can get on RSS. My

son

> > has some issues going on that seem to me like it could be RSS.

His

> > geneticist did not feel this is what he had but I am still not

> > convinced.

> >

> > Thank you

> >

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Guest guest

Hi

Based on his birth weight and height, he is not SGA and not likely to

be RSS either. There are many reasons why babies fall off on growth

including metabolic disorders, malabsorption issues, I hope the

doctors are investigating all possibilities

Sabina mother for Naomi

SGA and " probably not RSS " borth 3-15 and 15 inches

--

- In RSS-Support , " N " <denise@o...> wrote:

> Hi Beth, Thanks for your reply. My son has some of the symptons of

> RSS but not all of them and Dr.'s do not think this is what it is.

> My son was born over 7 lbs and over 19 " but started to slow down at

> age 9 months. I doubt I can make it to the convention even though

I

> would like to. Kind of an expensive trip to take.

> Thanks I hope I can hear what others think.

>

> Thanks

>

>

> > > Hello, I am posting this again, since the first one has not

> been

> > > posted. I am in need of any help or info. I can get on RSS. My

> son

> > > has some issues going on that seem to me like it could be RSS.

> His

> > > geneticist did not feel this is what he had but I am still not

> > > convinced.

> > >

> > > Thank you

> > >

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Guest guest

Hello, The doctors have tested many many thing including

malabsorption, and metabolic disorders but not sure if they have

done them all or not. They say they are doing all the test that they

can possibly do to figure out why my sons growth is so delayed.

> > > > Hello, I am posting this again, since the first one has not

> > been

> > > > posted. I am in need of any help or info. I can get on RSS.

My

> > son

> > > > has some issues going on that seem to me like it could be

RSS.

> > His

> > > > geneticist did not feel this is what he had but I am still

not

> > > > convinced.

> > > >

> > > > Thank you

> > > >

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Guest guest

,

Have the endocrinologist done a growth hormone stim test?

Beth

> > > Hello, I am posting this again, since the first one has not

> been

> > > posted. I am in need of any help or info. I can get on RSS. My

> son

> > > has some issues going on that seem to me like it could be RSS.

> His

> > > geneticist did not feel this is what he had but I am still not

> > > convinced.

> > >

> > > Thank you

> > >

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Guest guest

I am not sure if they did a stim test but they did check his growth

hormone and it was normal. Is this the same thing?

> > > > Hello, I am posting this again, since the first one has not

> > been

> > > > posted. I am in need of any help or info. I can get on RSS.

My

> > son

> > > > has some issues going on that seem to me like it could be

RSS.

> > His

> > > > geneticist did not feel this is what he had but I am still

not

> > > > convinced.

> > > >

> > > > Thank you

> > > >

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Guest guest

Yes, I think they did this test. I know they tested for growth

hormone deficiency and the test was normal.

> > > > Hello, I am posting this again, since the first one has not

> > been

> > > > posted. I am in need of any help or info. I can get on RSS.

My

> > son

> > > > has some issues going on that seem to me like it could be

RSS.

> > His

> > > > geneticist did not feel this is what he had but I am still

not

> > > > convinced.

> > > >

> > > > Thank you

> > > >

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Guest guest

,

While you are looking for a diagnosis, I hope that you will stay

with us and try to learn about different challenges and successes we

have with our RSS/SGA children. Your son was born a bit large for

an SGA baby, but that does not rule it out. It could be that he

was " programmed " to be larger and did not make it. Do you have

other children? If so, what size were they at birth? My son was 6

pounds, very large for an RSS baby, but he is the classic RSS kid.

This could be the same situation with your son. Since RSS and SGA

are treated basically the same, you may find this group to be very

helpful. We are like a big family - we don't always agree, but we

help each other out and support each other when we need to.

Jodi Z.

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,

My son was 6 pounds 11 ounces at birth and 20 inches. He had a hard

time growing right at the start dropping to 6 pounds and staying

there. However his head was normal size for his age, that is a

typical RSS trait. So you would expect his height and weight to be

below 5th percentile but his head to be 50th percentile.

I would suggest that you get a couple of pictures of your son and

post them here on the listserve. Also check out the pictures that

everyone has posted, you will definately be able to see how the kids

look similar to each other.

There are also some other RSS parents in Ohio so I'm sure they will be

emailing you to see where in Ohio you are.

Pattie

> ,

>

> While you are looking for a diagnosis, I hope that you will stay

> with us and try to learn about different challenges and successes we

> have with our RSS/SGA children. Your son was born a bit large for

> an SGA baby, but that does not rule it out. It could be that he

> was " programmed " to be larger and did not make it. Do you have

> other children? If so, what size were they at birth? My son was 6

> pounds, very large for an RSS baby, but he is the classic RSS kid.

> This could be the same situation with your son. Since RSS and SGA

> are treated basically the same, you may find this group to be very

> helpful. We are like a big family - we don't always agree, but we

> help each other out and support each other when we need to.

>

> Jodi Z.

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Guest guest

Hi Patti My son just started to really slow down on his growth and

nine months but stayed on his own curve and continues to do so. I

will have to check what head size was but I am going to say it was

in the 10% while his height and length were in the 3%. I need to

get all records from the Doctors to make sure. I tried to upload a

pic. of my son but I do not see it anywhere in the photos area.

> > ,

> >

> > While you are looking for a diagnosis, I hope that you will stay

> > with us and try to learn about different challenges and

successes we

> > have with our RSS/SGA children. Your son was born a bit large

for

> > an SGA baby, but that does not rule it out. It could be that he

> > was " programmed " to be larger and did not make it. Do you have

> > other children? If so, what size were they at birth? My son

was 6

> > pounds, very large for an RSS baby, but he is the classic RSS

kid.

> > This could be the same situation with your son. Since RSS and

SGA

> > are treated basically the same, you may find this group to be

very

> > helpful. We are like a big family - we don't always agree, but

we

> > help each other out and support each other when we need to.

> >

> > Jodi Z.

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Guest guest

Hi Jodi, I will definitely be sticking around for a while, for there

is something going on with my son and I really need to find out what.

My main reason to find out is we really would like to try growth

hormone on my son but the endo. he is seeing is a little hesitant at

this time.

I do have another son who was born over 7 lbs and is normal size and

has no problems other than he is turning 12 and he never stops

talking :)

Please take a look at the pic. I posted of my son and tell me what

you think.

Thanks

> ,

>

> While you are looking for a diagnosis, I hope that you will stay

> with us and try to learn about different challenges and successes

we

> have with our RSS/SGA children. Your son was born a bit large for

> an SGA baby, but that does not rule it out. It could be that he

> was " programmed " to be larger and did not make it. Do you have

> other children? If so, what size were they at birth? My son was

6

> pounds, very large for an RSS baby, but he is the classic RSS

kid.

> This could be the same situation with your son. Since RSS and SGA

> are treated basically the same, you may find this group to be very

> helpful. We are like a big family - we don't always agree, but we

> help each other out and support each other when we need to.

>

> Jodi Z.

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