Re: Update on Cajun

[Guest guest]

- my son has days, weeks and months of eating horribly -

especially during periods of sickness. Then - like this past week -

he has eaten incredibly well (during these times I always question

his diagnosis - but, then he reminds me a day or so later that he's

definately an RSS boy). I'm not sure about anyone else - but, I am

a firm believer that although our RSS children have lots and lots of

similarities - there will always be some disparities as well. I try

not to focus too much on what this person has - or what that person

has - but, gather the necessary info that may pertain to my child -

most of which has been incredibly useful information. What I'm

trying to say is - don't worry too much - you sound like you are

doing exactly what you need to do - looking for the experts, a

diagnosis of some kind and you are monitoring your child

faithfully. I pray you will find the answers you are looking for

and they will be of a positive outcome.

By the way, I would not let the healthcare professionals blame me.

As a matter of fact, you should have seen me in the pediatrician's

office the day they tried to do that. When Ian was 8 mos. old, I

firmly reminded them that they were ultimately " responsible " for my

son's healthcare and that if for some reason an answer wasn't found -

I was going to hold them personally responsible for any issues he

had later. That got their attention and a month later after a

myriad of tests - we finally got the diagnosis. Mind you - I wasn't

happy with it - but, it definately confirmed their and my belief

that I knew it wasn't me and there was definately something

different in my child.

Best of luck to you.

- H ()

> Hi!

>

> We had our wee guy weighed yesterday and at just over 11 months he

is

> 12lb7oz and nearly 241/2 inches (62cms) in length.

> In two months he has gained 1 lb 1oz(the most in that period of

time)

> in weight but has not grown any taller.

> He has no teeth yet and has just started a combination

of'swimming'

> and rolling across the floor to get to things. He has also just

> started to weight bare on his legs.He is very alert and healthy so

> have no worries there.

> He was 6ib 4 oz at birth (didn't measure him)and born at 38.4

weeks

> gestation with the appearance and behaviours of a 36 weeker. My

dates

> were right and he always measured 2 wks smaller throughout my

> pregnancy. All his siblings (there are 7 of them) were 8lb10oz-

> 10lb10oz with most being 9-10 lb and all were 16-21 days overdue.

> We are lucky that he does eat food and is still breast fed but

have no

> idea where it goes to. With the amount he consumes he should be a

> little buddha boy with rolls of fat.

> We will finally see the specialists on October 6th and hopefully

have

> a diagnosis. I am sick of ignorant, insensitive health

professionals

> implying that I am the problem.

>

> Does anyone else have a diagnosis of RSS but their child does eat

well?

> With him having so many of the characteristics of RSS I can't

think

> what else hit could be.

>

> Also I think someone was talking about a different growth chart

for

> RSS kids. Can someone please tell me how his weight and height is

> looking on this growth chart.

> How does he compare to other RSS kids at the same age?

> I guess I am just wanting some reassurance that he is 'getting

there'.

>

> Thanks

> ~~ (in NZ)

> mum to Cajun and the big kids

[Guest guest]

Hi ,

Just wanted to say that our RSS kids are very similar and very

individual as well. My daughter Olivia is on the smaller side but

is also a good eater for the most part! I have no idea where her

food goes! At 11 mo she was around 11.5lbs and now at almost 6

years she's 22lbs and 36 " tall.

You'll really have to stand your ground with the professionals, we

almost had Olivia taken away from us when she was 6 months old and

only weighed 5.5lbs, she was in hospital with and infection and long

story short they couldn't get her to gain either so we were off the

hook. Be glad that you got an early diagnosis though, we didn't

find out about RSS until she was 3 yrs, 3mo. old.

About the growth charts, have you joined MAGIC yet? They have RSS

growth charts for boys and girls. All of our Dr's have a copy and

that's what we use at the visits.

Good luck with the specialist on the 6th! Is it an Endo or

Genetisist that he's going to see?

Take care!

Leah, mom to 10 and Olivia 5.75yrs, 22lbs, 36 " , RSS, OI lots

of meds.

> Hi!

>

> We had our wee guy weighed yesterday and at just over 11 months he

is

> 12lb7oz and nearly 241/2 inches (62cms) in length.

> In two months he has gained 1 lb 1oz(the most in that period of

time)

> in weight but has not grown any taller.

> He has no teeth yet and has just started a combination

of'swimming'

> and rolling across the floor to get to things. He has also just

> started to weight bare on his legs.He is very alert and healthy so

> have no worries there.

> He was 6ib 4 oz at birth (didn't measure him)and born at 38.4

weeks

> gestation with the appearance and behaviours of a 36 weeker. My

dates

> were right and he always measured 2 wks smaller throughout my

> pregnancy. All his siblings (there are 7 of them) were 8lb10oz-

> 10lb10oz with most being 9-10 lb and all were 16-21 days overdue.

> We are lucky that he does eat food and is still breast fed but

have no

> idea where it goes to. With the amount he consumes he should be a

> little buddha boy with rolls of fat.

> We will finally see the specialists on October 6th and hopefully

have

> a diagnosis. I am sick of ignorant, insensitive health

professionals

> implying that I am the problem.

>

> Does anyone else have a diagnosis of RSS but their child does eat

well?

> With him having so many of the characteristics of RSS I can't

think

> what else hit could be.

>

> Also I think someone was talking about a different growth chart

for

> RSS kids. Can someone please tell me how his weight and height is

> looking on this growth chart.

> How does he compare to other RSS kids at the same age?

> I guess I am just wanting some reassurance that he is 'getting

there'.

>

> Thanks

> ~~ (in NZ)

> mum to Cajun and the big kids

[Guest guest]

Hi,

Emerence's geneticist calls her RSS because she has about 10 of the

listed characteristics, only notable exception is the " face " . All

of her characteristics are mild. Dr. H calls her SGA. She is one

of the inbetween kids - the first year Dr. H debated RSS, SGA, RSS,

SGA, RSS and finally went SGA.

She is an eater, however not a lot. She will try just about

anything except smushy foods - squash and mashed potatoes namely.

Some times she doesn't eat a lot - the other day she had 4 froot

loops and some milke for breakfast. However, she does eat enough

over the cours of they day.

Good luck with the new doctor!

, mom to 5 and Emerence 2.5

> Hi!

>

> We had our wee guy weighed yesterday and at just over 11 months he

is

> 12lb7oz and nearly 241/2 inches (62cms) in length.

> In two months he has gained 1 lb 1oz(the most in that period of

time)

> in weight but has not grown any taller.

> He has no teeth yet and has just started a combination

of'swimming'

> and rolling across the floor to get to things. He has also just

> started to weight bare on his legs.He is very alert and healthy so

> have no worries there.

> He was 6ib 4 oz at birth (didn't measure him)and born at 38.4

weeks

> gestation with the appearance and behaviours of a 36 weeker. My

dates

> were right and he always measured 2 wks smaller throughout my

> pregnancy. All his siblings (there are 7 of them) were 8lb10oz-

> 10lb10oz with most being 9-10 lb and all were 16-21 days overdue.

> We are lucky that he does eat food and is still breast fed but

have no

> idea where it goes to. With the amount he consumes he should be a

> little buddha boy with rolls of fat.

> We will finally see the specialists on October 6th and hopefully

have

> a diagnosis. I am sick of ignorant, insensitive health

professionals

> implying that I am the problem.

>

> Does anyone else have a diagnosis of RSS but their child does eat

well?

> With him having so many of the characteristics of RSS I can't

think

> what else hit could be.

>

> Also I think someone was talking about a different growth chart

for

> RSS kids. Can someone please tell me how his weight and height is

> looking on this growth chart.

> How does he compare to other RSS kids at the same age?

> I guess I am just wanting some reassurance that he is 'getting

there'.

>

> Thanks

> ~~ (in NZ)

> mum to Cajun and the big kids

[Guest guest]

Hi again - just had alook back thru Georgia- Mays baby book and she was

12lb 12 oz and 68cm in length at 12 months - she also only gained about 1/2 a

pound a month - tho she didnt have the appetite that Cajun obviously does -

which I can see why you are puzzled.She has just trucked along at the same rate

all the way thru - so now at 9 she is120 cm and 20 kgs ( the same height and

slightly lighter than her 5 year old brother)Know this info probably dosent help

much - just been thinking of u - it must be driving u mad waiting for your

appointment!!( Know that feeling well) - Lee-Anne NZ

-- Original Message -----

From: brody1212

To: RSS-Support

Sent: Friday, September 16, 2005 9:26 AM

Subject: Update on Cajun

Hi!

We had our wee guy weighed yesterday and at just over 11 months he is

12lb7oz and nearly 241/2 inches (62cms) in length.

In two months he has gained 1 lb 1oz(the most in that period of time)

in weight but has not grown any taller.

He has no teeth yet and has just started a combination of'swimming'

and rolling across the floor to get to things. He has also just

started to weight bare on his legs.He is very alert and healthy so

have no worries there.

He was 6ib 4 oz at birth (didn't measure him)and born at 38.4 weeks

gestation with the appearance and behaviours of a 36 weeker. My dates

were right and he always measured 2 wks smaller throughout my

pregnancy. All his siblings (there are 7 of them) were 8lb10oz-

10lb10oz with most being 9-10 lb and all were 16-21 days overdue.

We are lucky that he does eat food and is still breast fed but have no

idea where it goes to. With the amount he consumes he should be a

little buddha boy with rolls of fat.

We will finally see the specialists on October 6th and hopefully have

a diagnosis. I am sick of ignorant, insensitive health professionals

implying that I am the problem.

Does anyone else have a diagnosis of RSS but their child does eat well?

With him having so many of the characteristics of RSS I can't think

what else hit could be.

Also I think someone was talking about a different growth chart for

RSS kids. Can someone please tell me how his weight and height is

looking on this growth chart.

How does he compare to other RSS kids at the same age?

I guess I am just wanting some reassurance that he is 'getting there'.

Thanks

~~ (in NZ)

mum to Cajun and the big kids