Re: Geneticist appointment was today

[Guest guest]

Hi

NO I haven't had all of that happen, but I will tell you that Adam was born

small for dates (I guess that's what we call IUGR up here in Canada) and the

reason we were so delayed in his RSS diagnosis was that he was gaining well. IT

wasn't until he was just short of 2 years old that everything stopped and he

went for months without growing, got all sickly looking and became skin and

bones. He was a rather chunky baby with lots of rolls!!

But he is most definitely RSS according to Dr. H.

Just make sure this doctor is not ignoring Summer. Yes, more than likely it is

the same as Autumn, however, IF by chance it is something else with Summer that

is easily corrected (I don't know what, but you never know) you would hate for

some doctor to decide not to test the " usual suspects " because of an incorrect

assumption on his part.

Keep us up to date!!

Debby

Geneticist appointment was today

Hi all. Summer had her appointment with the geneticist today. He is

very convinced that she is copying Autumn. Their growth charts are

practically identical and Summer's head growth is just .5 cm below

where Autumn's was at this age, and Autumn was born with it .5 cm

bigger, so it is even identical head growth. He didn't see and

length assymetry of Summer and didn't measure for any, but she does

have her rt leg thicker than her left. He wants to keep an eye on

that and even said that in the future that could help with a

diagnosis of RSS because of the assymetry....sound right? When he

saw Autumn for the first time, he instantly said she looks RSS, but

Summer doesn't strike him so with any triangularity like Autumn, and

it is really weird, Summer is same weight/ length that Autumn was at

this age but she looks kind of chunky... not her belly but her cheeks

and legs (one has a roll, the other has 4!!!!!) Autumn looked much

thinner. It's kind of funny, becase he said looking at her charts and

low weight/length, then looking at her, she looks chunkier than you

would think. I remember her being born IUGR and stick arms, no

belly...etc, but the girl had cheeks and thighs even at 4lbs 13 oz,

the nurses all commented on it! Go figure. Cheeks run in our

family, even Autumn, they are last to go with weight loss and first

to come with gain...Ok, back to the appt. I also gave the doc the

article on the findings of RSS and chromosome 11. He was very

intersted in it and is planning on contacting them and looking into a

test the hospital has. He said this test currently exsists for large

children and the findings for RSS was the flip side of it and he will

see if they can do it under special circumstances for him. He said

he would want Autumn to have it done because she is more typical RSS.

He doesn't even want to try the upd7 test because Autumn is not and

he thinks they ahve the same issue. He is fairly sure that there is

some sort of issue with the genetic imprinting that caused

Autumn to have this and Summer, and he doesnt' know why, but it seems

to be RSS. As for Summer though, again, she doesnt' have

triangularity, can that still be RSS??? He said it can... Anyways,

she has the incurved 5th finger, current thickness assymetry, reflux,

growth under 3rd with IUGR and some others I don't remember. I had

identical pregnancies, both with tiny little heads at birth (said to

be more genetic than nutritional caused) and both their heads caught

up although Summers is a little slower but apparetnly is climbing up

the charts so far, but nothing else is. I told them how concerned I

am at this 6 mos mark becasue that is when everything happens. Autumn

fell further and further aways weight wise from teh charts to a

plateau, my oldest although not RSS, fell down below charts then

after a year or 2 moved up to below the 3rd %, and now I am very

worried about Summer. Ocean, my 3 yr old, is the only one I have had

no growth issues with. He likes to eat, maintains his growth, and

although dropped some in %'s from baby fat to little boy, he is doing

well and in range for parental height. my biggest concern is if

Summer is going to get sick like Autumn did/does and have her weight

issues and health issues the same. I know and the docs have said she

is different and may not, and logically I understand, but I have been

told during the pregnancy and before that usually just one child has

issues like this and that is because it a 1 in some huge number

chance. Now, I can handle the issues, but I would hate to see

another child of mine go through what Autumn has this year.

The geneticist is so convinced it is the same issue that he didn't

even order bloodwork or anything because he doesnt' see any reason

to, although my ped will order some most likely. I also hope nothing

gets missed because he assumes it is like Autumn.

Also, they don't toss around the RSS diagnosis and have told me that

they only know of one family with 2 diagnosed becasue it is not

typical, but I wonder if they were similar with looks like

triangularity, assymetry, etc. Autumn has no assymetry noticed,

Summer does. Autumn has triagularity, Summer doesn't seem to....this

is just plain weird to me. tHe doc wants to follow Summer, track her

growth, weight, assymetry and won't do any official diagnosis for a

while because will monitor Summer and track her just liek he did with

Autumn. He wants me to talk to GI and kind of prepare them for

possible issues and get ideas on high fat foods that are milk free

because Summer gets hives and swells with contact. Summer's

wieght/length is good now but the 6mos mark has come and gone. She

has not gained any weight in 3 weeks now, but she has had a stuffy

nose...

Anyone else have this happen?????

mom to Autumn, Summer, Ocean, Skye

[Guest guest]

- I have no authority or intelligence on the matter

myself - but, maybe Summer is just SGA?? As you know, they have

similar issues as RSS and are usually treated the same. At least,

that's what I remember from previous posts. Keep us posted. I'm so

glad you shared your info with all of us. My thoughts are with you.

- H

>

> Hi all. Summer had her appointment with the geneticist today. He

is

> very convinced that she is copying Autumn. Their growth charts

are

> practically identical and Summer's head growth is just .5 cm below

> where Autumn's was at this age, and Autumn was born with it .5 cm

> bigger, so it is even identical head growth. He didn't see and

> length assymetry of Summer and didn't measure for any, but she

does

> have her rt leg thicker than her left. He wants to keep an eye on

> that and even said that in the future that could help with a

> diagnosis of RSS because of the assymetry....sound right? When he

> saw Autumn for the first time, he instantly said she looks RSS,

but

> Summer doesn't strike him so with any triangularity like Autumn,

and

> it is really weird, Summer is same weight/ length that Autumn was

at

> this age but she looks kind of chunky... not her belly but her

cheeks

> and legs (one has a roll, the other has 4!!!!!) Autumn looked much

> thinner. It's kind of funny, becase he said looking at her charts

and

> low weight/length, then looking at her, she looks chunkier than

you

> would think. I remember her being born IUGR and stick arms, no

> belly...etc, but the girl had cheeks and thighs even at 4lbs 13

oz,

> the nurses all commented on it! Go figure. Cheeks run in our

> family, even Autumn, they are last to go with weight loss and

first

> to come with gain...Ok, back to the appt. I also gave the doc the

> article on the findings of RSS and chromosome 11. He was very

> intersted in it and is planning on contacting them and looking

into a

> test the hospital has. He said this test currently exsists for

large

> children and the findings for RSS was the flip side of it and he

will

> see if they can do it under special circumstances for him. He

said

> he would want Autumn to have it done because she is more typical

RSS.

> He doesn't even want to try the upd7 test because Autumn is not

and

> he thinks they ahve the same issue. He is fairly sure that there

is

> some sort of issue with the genetic imprinting that caused

> Autumn to have this and Summer, and he doesnt' know why, but it

seems

> to be RSS. As for Summer though, again, she doesnt' have

> triangularity, can that still be RSS??? He said it can...

Anyways,

> she has the incurved 5th finger, current thickness assymetry,

reflux,

> growth under 3rd with IUGR and some others I don't remember. I

had

> identical pregnancies, both with tiny little heads at birth (said

to

> be more genetic than nutritional caused) and both their heads

caught

> up although Summers is a little slower but apparetnly is climbing

up

> the charts so far, but nothing else is. I told them how concerned

I

> am at this 6 mos mark becasue that is when everything happens.

Autumn

> fell further and further aways weight wise from teh charts to a

> plateau, my oldest although not RSS, fell down below charts then

> after a year or 2 moved up to below the 3rd %, and now I am very

> worried about Summer. Ocean, my 3 yr old, is the only one I have

had

> no growth issues with. He likes to eat, maintains his growth, and

> although dropped some in %'s from baby fat to little boy, he is

doing

> well and in range for parental height. my biggest concern is if

> Summer is going to get sick like Autumn did/does and have her

weight

> issues and health issues the same. I know and the docs have said

she

> is different and may not, and logically I understand, but I have

been

> told during the pregnancy and before that usually just one child

has

> issues like this and that is because it a 1 in some huge number

> chance. Now, I can handle the issues, but I would hate to see

> another child of mine go through what Autumn has this year.

> The geneticist is so convinced it is the same issue that he didn't

> even order bloodwork or anything because he doesnt' see any

reason

> to, although my ped will order some most likely. I also hope

nothing

> gets missed because he assumes it is like Autumn.

> Also, they don't toss around the RSS diagnosis and have told me

that

> they only know of one family with 2 diagnosed becasue it is not

> typical, but I wonder if they were similar with looks like

> triangularity, assymetry, etc. Autumn has no assymetry noticed,

> Summer does. Autumn has triagularity, Summer doesn't seem

to....this

> is just plain weird to me. tHe doc wants to follow Summer, track

her

> growth, weight, assymetry and won't do any official diagnosis for

a

> while because will monitor Summer and track her just liek he did

with

> Autumn. He wants me to talk to GI and kind of prepare them for

> possible issues and get ideas on high fat foods that are milk free

> because Summer gets hives and swells with contact. Summer's

> wieght/length is good now but the 6mos mark has come and gone.

She

> has not gained any weight in 3 weeks now, but she has had a stuffy

> nose...

>

> Anyone else have this happen?????

>

> mom to Autumn, Summer, Ocean, Skye

>

[Guest guest]

i wish this was easier for your family i also know you hate to hear hurry up

and wait but maybe at this point that all you can really do. may i asks what is

the 11 cromasone test? i missed that one all in all i wish much for your girls

it is so hard but you are doing all you can

cara mom to jacob

anderkat3 wrote:

Hi all. Summer had her appointment with the geneticist today. He is

very convinced that she is copying Autumn. Their growth charts are

practically identical and Summer's head growth is just .5 cm below

where Autumn's was at this age, and Autumn was born with it .5 cm

bigger, so it is even identical head growth. He didn't see and

length assymetry of Summer and didn't measure for any, but she does

have her rt leg thicker than her left. He wants to keep an eye on

that and even said that in the future that could help with a

diagnosis of RSS because of the assymetry....sound right? When he

saw Autumn for the first time, he instantly said she looks RSS, but

Summer doesn't strike him so with any triangularity like Autumn, and

it is really weird, Summer is same weight/ length that Autumn was at

this age but she looks kind of chunky... not her belly but her cheeks

and legs (one has a roll, the other has 4!!!!!) Autumn looked much

thinner. It's kind of funny, becase he said looking at her charts and

low weight/length, then looking at her, she looks chunkier than you

would think. I remember her being born IUGR and stick arms, no

belly...etc, but the girl had cheeks and thighs even at 4lbs 13 oz,

the nurses all commented on it! Go figure. Cheeks run in our

family, even Autumn, they are last to go with weight loss and first

to come with gain...Ok, back to the appt. I also gave the doc the

article on the findings of RSS and chromosome 11. He was very

intersted in it and is planning on contacting them and looking into a

test the hospital has. He said this test currently exsists for large

children and the findings for RSS was the flip side of it and he will

see if they can do it under special circumstances for him. He said

he would want Autumn to have it done because she is more typical RSS.

He doesn't even want to try the upd7 test because Autumn is not and

he thinks they ahve the same issue. He is fairly sure that there is

some sort of issue with the genetic imprinting that caused

Autumn to have this and Summer, and he doesnt' know why, but it seems

to be RSS. As for Summer though, again, she doesnt' have

triangularity, can that still be RSS??? He said it can... Anyways,

she has the incurved 5th finger, current thickness assymetry, reflux,

growth under 3rd with IUGR and some others I don't remember. I had

identical pregnancies, both with tiny little heads at birth (said to

be more genetic than nutritional caused) and both their heads caught

up although Summers is a little slower but apparetnly is climbing up

the charts so far, but nothing else is. I told them how concerned I

am at this 6 mos mark becasue that is when everything happens. Autumn

fell further and further aways weight wise from teh charts to a

plateau, my oldest although not RSS, fell down below charts then

after a year or 2 moved up to below the 3rd %, and now I am very

worried about Summer. Ocean, my 3 yr old, is the only one I have had

no growth issues with. He likes to eat, maintains his growth, and

although dropped some in %'s from baby fat to little boy, he is doing

well and in range for parental height. my biggest concern is if

Summer is going to get sick like Autumn did/does and have her weight

issues and health issues the same. I know and the docs have said she

is different and may not, and logically I understand, but I have been

told during the pregnancy and before that usually just one child has

issues like this and that is because it a 1 in some huge number

chance. Now, I can handle the issues, but I would hate to see

another child of mine go through what Autumn has this year.

The geneticist is so convinced it is the same issue that he didn't

even order bloodwork or anything because he doesnt' see any reason

to, although my ped will order some most likely. I also hope nothing

gets missed because he assumes it is like Autumn.

Also, they don't toss around the RSS diagnosis and have told me that

they only know of one family with 2 diagnosed becasue it is not

typical, but I wonder if they were similar with looks like

triangularity, assymetry, etc. Autumn has no assymetry noticed,

Summer does. Autumn has triagularity, Summer doesn't seem to....this

is just plain weird to me. tHe doc wants to follow Summer, track her

growth, weight, assymetry and won't do any official diagnosis for a

while because will monitor Summer and track her just liek he did with

Autumn. He wants me to talk to GI and kind of prepare them for

possible issues and get ideas on high fat foods that are milk free

because Summer gets hives and swells with contact. Summer's

wieght/length is good now but the 6mos mark has come and gone. She

has not gained any weight in 3 weeks now, but she has had a stuffy

nose...

Anyone else have this happen?????

mom to Autumn, Summer, Ocean, Skye

[Guest guest]

Hi . That is what I asked the geneticist and he said that he

feels the issue with Autumn and Summer are caused by the same thing

and he says most likely RSS and not SGA... I dont' know what to

think, I really thought SGA. I think my mind is overflowing with

what if's and how can we ever know for sure, all that stuff...and of

course, why.

> >

> > Hi all. Summer had her appointment with the geneticist today.

He

> is

> > very convinced that she is copying Autumn. Their growth charts

> are

> > practically identical and Summer's head growth is just .5 cm

below

> > where Autumn's was at this age, and Autumn was born with it .5 cm

> > bigger, so it is even identical head growth. He didn't see and

> > length assymetry of Summer and didn't measure for any, but she

> does

> > have her rt leg thicker than her left. He wants to keep an eye

on

> > that and even said that in the future that could help with a

> > diagnosis of RSS because of the assymetry....sound right? When

he

> > saw Autumn for the first time, he instantly said she looks RSS,

> but

> > Summer doesn't strike him so with any triangularity like Autumn,

> and

> > it is really weird, Summer is same weight/ length that Autumn

was

> at

> > this age but she looks kind of chunky... not her belly but her

> cheeks

> > and legs (one has a roll, the other has 4!!!!!) Autumn looked

much

> > thinner. It's kind of funny, becase he said looking at her charts

> and

> > low weight/length, then looking at her, she looks chunkier than

> you

> > would think. I remember her being born IUGR and stick arms, no

> > belly...etc, but the girl had cheeks and thighs even at 4lbs 13

> oz,

> > the nurses all commented on it! Go figure. Cheeks run in our

> > family, even Autumn, they are last to go with weight loss and

> first

> > to come with gain...Ok, back to the appt. I also gave the doc

the

> > article on the findings of RSS and chromosome 11. He was very

> > intersted in it and is planning on contacting them and looking

> into a

> > test the hospital has. He said this test currently exsists for

> large

> > children and the findings for RSS was the flip side of it and he

> will

> > see if they can do it under special circumstances for him. He

> said

> > he would want Autumn to have it done because she is more typical

> RSS.

> > He doesn't even want to try the upd7 test because Autumn is not

> and

> > he thinks they ahve the same issue. He is fairly sure that there

> is

> > some sort of issue with the genetic imprinting that caused

> > Autumn to have this and Summer, and he doesnt' know why, but it

> seems

> > to be RSS. As for Summer though, again, she doesnt' have

> > triangularity, can that still be RSS??? He said it can...

> Anyways,

> > she has the incurved 5th finger, current thickness assymetry,

> reflux,

> > growth under 3rd with IUGR and some others I don't remember. I

> had

> > identical pregnancies, both with tiny little heads at birth (said

> to

> > be more genetic than nutritional caused) and both their heads

> caught

> > up although Summers is a little slower but apparetnly is climbing

> up

> > the charts so far, but nothing else is. I told them how

concerned

> I

> > am at this 6 mos mark becasue that is when everything happens.

> Autumn

> > fell further and further aways weight wise from teh charts to a

> > plateau, my oldest although not RSS, fell down below charts then

> > after a year or 2 moved up to below the 3rd %, and now I am very

> > worried about Summer. Ocean, my 3 yr old, is the only one I have

> had

> > no growth issues with. He likes to eat, maintains his growth,

and

> > although dropped some in %'s from baby fat to little boy, he is

> doing

> > well and in range for parental height. my biggest concern is if

> > Summer is going to get sick like Autumn did/does and have her

> weight

> > issues and health issues the same. I know and the docs have said

> she

> > is different and may not, and logically I understand, but I have

> been

> > told during the pregnancy and before that usually just one child

> has

> > issues like this and that is because it a 1 in some huge number

> > chance. Now, I can handle the issues, but I would hate to see

> > another child of mine go through what Autumn has this year.

> > The geneticist is so convinced it is the same issue that he

didn't

> > even order bloodwork or anything because he doesnt' see any

> reason

> > to, although my ped will order some most likely. I also hope

> nothing

> > gets missed because he assumes it is like Autumn.

> > Also, they don't toss around the RSS diagnosis and have told me

> that

> > they only know of one family with 2 diagnosed becasue it is not

> > typical, but I wonder if they were similar with looks like

> > triangularity, assymetry, etc. Autumn has no assymetry noticed,

> > Summer does. Autumn has triagularity, Summer doesn't seem

> to....this

> > is just plain weird to me. tHe doc wants to follow Summer, track

> her

> > growth, weight, assymetry and won't do any official diagnosis for

> a

> > while because will monitor Summer and track her just liek he did

> with

> > Autumn. He wants me to talk to GI and kind of prepare them for

> > possible issues and get ideas on high fat foods that are milk

free

> > because Summer gets hives and swells with contact. Summer's

> > wieght/length is good now but the 6mos mark has come and gone.

> She

> > has not gained any weight in 3 weeks now, but she has had a

stuffy

> > nose...

> >

> > Anyone else have this happen?????

> >

> > mom to Autumn, Summer, Ocean, Skye

> >

>

[Guest guest]

Hi Debby. That is interesting to hear about Adam, thanks for

sharing! I am so curious about Summer and I have no idea what Dr. H

will say, I plan on going to the convetion and having her see my

girls.

I did call Summer's ped today and I am requesting her original ftt

bloodwork and urine and any others be done. I would hate to miss

something jsut because Autumn is her sister...if they were not

related, all the workups would have been done. The geneticist is

just really thinking it is the same as Autumn. Wow, my mind is

reeling.

>

> Hi

> NO I haven't had all of that happen, but I will tell you that Adam

was born small for dates (I guess that's what we call IUGR up here in

Canada) and the reason we were so delayed in his RSS diagnosis was

that he was gaining well. IT wasn't until he was just short of 2

years old that everything stopped and he went for months without

growing, got all sickly looking and became skin and bones. He was a

rather chunky baby with lots of rolls!!

> But he is most definitely RSS according to Dr. H.

>

> Just make sure this doctor is not ignoring Summer. Yes, more than

likely it is the same as Autumn, however, IF by chance it is

something else with Summer that is easily corrected (I don't know

what, but you never know) you would hate for some doctor to decide

not to test the " usual suspects " because of an incorrect assumption

on his part.

>

> Keep us up to date!!

>

> Debby

>

> Geneticist appointment was today

>

>

> Hi all. Summer had her appointment with the geneticist today.

He is

> very convinced that she is copying Autumn. Their growth charts

are

> practically identical and Summer's head growth is just .5 cm

below

> where Autumn's was at this age, and Autumn was born with it .5 cm

> bigger, so it is even identical head growth. He didn't see and

> length assymetry of Summer and didn't measure for any, but she

does

> have her rt leg thicker than her left. He wants to keep an eye

on

> that and even said that in the future that could help with a

> diagnosis of RSS because of the assymetry....sound right? When

he

> saw Autumn for the first time, he instantly said she looks RSS,

but

> Summer doesn't strike him so with any triangularity like Autumn,

and

> it is really weird, Summer is same weight/ length that Autumn

was at

> this age but she looks kind of chunky... not her belly but her

cheeks

> and legs (one has a roll, the other has 4!!!!!) Autumn looked

much

> thinner. It's kind of funny, becase he said looking at her charts

and

> low weight/length, then looking at her, she looks chunkier than

you

> would think. I remember her being born IUGR and stick arms, no

> belly...etc, but the girl had cheeks and thighs even at 4lbs 13

oz,

> the nurses all commented on it! Go figure. Cheeks run in our

> family, even Autumn, they are last to go with weight loss and

first

> to come with gain...Ok, back to the appt. I also gave the doc

the

> article on the findings of RSS and chromosome 11. He was very

> intersted in it and is planning on contacting them and looking

into a

> test the hospital has. He said this test currently exsists for

large

> children and the findings for RSS was the flip side of it and he

will

> see if they can do it under special circumstances for him. He

said

> he would want Autumn to have it done because she is more typical

RSS.

> He doesn't even want to try the upd7 test because Autumn is not

and

> he thinks they ahve the same issue. He is fairly sure that there

is

> some sort of issue with the genetic imprinting that caused

> Autumn to have this and Summer, and he doesnt' know why, but it

seems

> to be RSS. As for Summer though, again, she doesnt' have

> triangularity, can that still be RSS??? He said it can...

Anyways,

> she has the incurved 5th finger, current thickness assymetry,

reflux,

> growth under 3rd with IUGR and some others I don't remember. I

had

> identical pregnancies, both with tiny little heads at birth (said

to

> be more genetic than nutritional caused) and both their heads

caught

> up although Summers is a little slower but apparetnly is climbing

up

> the charts so far, but nothing else is. I told them how

concerned I

> am at this 6 mos mark becasue that is when everything happens.

Autumn

> fell further and further aways weight wise from teh charts to a

> plateau, my oldest although not RSS, fell down below charts then

> after a year or 2 moved up to below the 3rd %, and now I am very

> worried about Summer. Ocean, my 3 yr old, is the only one I have

had

> no growth issues with. He likes to eat, maintains his growth,

and

> although dropped some in %'s from baby fat to little boy, he is

doing

> well and in range for parental height. my biggest concern is if

> Summer is going to get sick like Autumn did/does and have her

weight

> issues and health issues the same. I know and the docs have said

she

> is different and may not, and logically I understand, but I have

been

> told during the pregnancy and before that usually just one child

has

> issues like this and that is because it a 1 in some huge number

> chance. Now, I can handle the issues, but I would hate to see

> another child of mine go through what Autumn has this year.

> The geneticist is so convinced it is the same issue that he

didn't

> even order bloodwork or anything because he doesnt' see any

reason

> to, although my ped will order some most likely. I also hope

nothing

> gets missed because he assumes it is like Autumn.

> Also, they don't toss around the RSS diagnosis and have told me

that

> they only know of one family with 2 diagnosed becasue it is not

> typical, but I wonder if they were similar with looks like

> triangularity, assymetry, etc. Autumn has no assymetry noticed,

> Summer does. Autumn has triagularity, Summer doesn't seem

to....this

> is just plain weird to me. tHe doc wants to follow Summer, track

her

> growth, weight, assymetry and won't do any official diagnosis for

a

> while because will monitor Summer and track her just liek he did

with

> Autumn. He wants me to talk to GI and kind of prepare them for

> possible issues and get ideas on high fat foods that are milk

free

> because Summer gets hives and swells with contact. Summer's

> wieght/length is good now but the 6mos mark has come and gone.

She

> has not gained any weight in 3 weeks now, but she has had a

stuffy

> nose...

>

> Anyone else have this happen?????

>

> mom to Autumn, Summer, Ocean, Skye

>

>

>

>

>

>

>

[Guest guest]

Hi Cara. The chromosome 11 study was something that someonce posted

on here about a new finding that up to 50% of RSS is could be caused

by a genetic imprinting problem on chromosome 11 . I was sent the

paper and the doc is what he calls 'doing his homework' on it and

contacting the people about it and researching. That is all I know.

He was very interested. I don't know what anyone else here knows

about it....

thanks so much for the support.

katherine

> Hi all. Summer had her appointment with the geneticist today.

He is

> very convinced that she is copying Autumn. Their growth charts are

> practically identical and Summer's head growth is just .5 cm below

> where Autumn's was at this age, and Autumn was born with it .5 cm

> bigger, so it is even identical head growth. He didn't see and

> length assymetry of Summer and didn't measure for any, but she does

> have her rt leg thicker than her left. He wants to keep an eye on

> that and even said that in the future that could help with a

> diagnosis of RSS because of the assymetry....sound right? When he

> saw Autumn for the first time, he instantly said she looks RSS, but

> Summer doesn't strike him so with any triangularity like Autumn,

and

> it is really weird, Summer is same weight/ length that Autumn was

at

> this age but she looks kind of chunky... not her belly but her

cheeks

> and legs (one has a roll, the other has 4!!!!!) Autumn looked much

> thinner. It's kind of funny, becase he said looking at her charts

and

> low weight/length, then looking at her, she looks chunkier than you

> would think. I remember her being born IUGR and stick arms, no

> belly...etc, but the girl had cheeks and thighs even at 4lbs 13 oz,

> the nurses all commented on it! Go figure. Cheeks run in our

> family, even Autumn, they are last to go with weight loss and first

> to come with gain...Ok, back to the appt. I also gave the doc the

> article on the findings of RSS and chromosome 11. He was very

> intersted in it and is planning on contacting them and looking into

a

> test the hospital has. He said this test currently exsists for

large

> children and the findings for RSS was the flip side of it and he

will

> see if they can do it under special circumstances for him. He said

> he would want Autumn to have it done because she is more typical

RSS.

> He doesn't even want to try the upd7 test because Autumn is not and

> he thinks they ahve the same issue. He is fairly sure that there is

> some sort of issue with the genetic imprinting that caused

> Autumn to have this and Summer, and he doesnt' know why, but it

seems

> to be RSS. As for Summer though, again, she doesnt' have

> triangularity, can that still be RSS??? He said it can...

Anyways,

> she has the incurved 5th finger, current thickness assymetry,

reflux,

> growth under 3rd with IUGR and some others I don't remember. I had

> identical pregnancies, both with tiny little heads at birth (said

to

> be more genetic than nutritional caused) and both their heads

caught

> up although Summers is a little slower but apparetnly is climbing

up

> the charts so far, but nothing else is. I told them how concerned

I

> am at this 6 mos mark becasue that is when everything happens.

Autumn

> fell further and further aways weight wise from teh charts to a

> plateau, my oldest although not RSS, fell down below charts then

> after a year or 2 moved up to below the 3rd %, and now I am very

> worried about Summer. Ocean, my 3 yr old, is the only one I have

had

> no growth issues with. He likes to eat, maintains his growth, and

> although dropped some in %'s from baby fat to little boy, he is

doing

> well and in range for parental height. my biggest concern is if

> Summer is going to get sick like Autumn did/does and have her

weight

> issues and health issues the same. I know and the docs have said

she

> is different and may not, and logically I understand, but I have

been

> told during the pregnancy and before that usually just one child

has

> issues like this and that is because it a 1 in some huge number

> chance. Now, I can handle the issues, but I would hate to see

> another child of mine go through what Autumn has this year.

> The geneticist is so convinced it is the same issue that he didn't

> even order bloodwork or anything because he doesnt' see any reason

> to, although my ped will order some most likely. I also hope

nothing

> gets missed because he assumes it is like Autumn.

> Also, they don't toss around the RSS diagnosis and have told me

that

> they only know of one family with 2 diagnosed becasue it is not

> typical, but I wonder if they were similar with looks like

> triangularity, assymetry, etc. Autumn has no assymetry noticed,

> Summer does. Autumn has triagularity, Summer doesn't seem

to....this

> is just plain weird to me. tHe doc wants to follow Summer, track

her

> growth, weight, assymetry and won't do any official diagnosis for a

> while because will monitor Summer and track her just liek he did

with

> Autumn. He wants me to talk to GI and kind of prepare them for

> possible issues and get ideas on high fat foods that are milk free

> because Summer gets hives and swells with contact. Summer's

> wieght/length is good now but the 6mos mark has come and gone. She

> has not gained any weight in 3 weeks now, but she has had a stuffy

> nose...

>

> Anyone else have this happen?????

>

> mom to Autumn, Summer, Ocean, Skye

>

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