RSS dilemma

March 1, 2006

I have a dilemma regarding my son (8 1/2yrs RSS) For those of

you who dont know us, luckily has RSS quite mildly and has

consequently had little medical input over the years. He has never

had, or been offered any type of growth hormone, but at 4ft 1inch

and weighing 3st 3oz he is doing very well regardless. His only

medical input over the last 4yrs has been regarding his glue ear or

his diet issues/feeding problems/fussy eating. (call it what you

like).

Since joining this group and seeing the amount of input that is

normal for RSS kids in the states, we decided to push for more help

from a paediatrician regarding RSS as a whole, rather than as

seperate unrelated issues, which is how it has been treated up until

now. I am glad to say that an appt has finally come through with a

paed who has some experience with RSS. But now i have this

dilemma...we have never actually sat down with and explained

to him that he has Silver syndrome. He was so tiny when

first diagnosed that he would never have understood, and as he got

older, his medical input became less and less, and the different

things he was seen for were treated as seperate and unrelated.

Consequently we never talked about it. Now i dont know how to bring

it up. With hindsight it is obviously foolish that we never

discussed it with him, but this was not a conscious choice, it just

never seemed to come up, and they get big so quick.

Now is 8 1/2, he has this paed appointment looming and we

need to prepare him in advance. But how do we do it? How much does

he know already? Im sure he took in some information when he was

younger, but have no way of knowing how much. I just have no idea of

the best way to approach this. Any advice would be much appriciated.

On a completely unrelated issue, I am heavily pregnant with

Kaulbach number three, who was actually due on the 27th feb and it

is also my eldest daughters 10th birthday today so consequently i am

a tad stressed all round. So sorry if this mail is a bit disjointed.

Thanks for any help.xxx Lizzy K. Mum to Jessie now 10, 8 1/2

RSS and big bump (please come soon)

March 1, 2006

Hi Lizzy

First of all good luck on the pending delivery!!!

As for , I am thinking you might just be casual at this point in time.

Maybe tell him that you will be taking him to a doctor to talk about his growth.

I would quickly follow with something that will reassure him. Something like

" it's not to say that mommy or daddy think that you are not perfect just the way

you are, because YOU ARE the best, it's just that we have been reading some

things on the computer and we want to make sure that you keep on being the

perfect boy you are " .

He will probably say " sure fine " and leave it at that. (My son by the way, is 13

now, but we started GH at 8, and I remember conversations).

I don't think I would get into names of syndromes or anything else. My final

comment would be " now if you have any questions, I want you to ask us OK? "

And just see where it leads you. As time goes on, or depending on what you

discover at the doctor's appt., well then you can re-evaluate and come to a

decision then on if he needs more information.

Take care

Debby B.

RSS dilemma

I have a dilemma regarding my son (8 1/2yrs RSS) For those of

you who dont know us, luckily has RSS quite mildly and has

consequently had little medical input over the years. He has never

had, or been offered any type of growth hormone, but at 4ft 1inch

and weighing 3st 3oz he is doing very well regardless. His only

medical input over the last 4yrs has been regarding his glue ear or

his diet issues/feeding problems/fussy eating. (call it what you

like).

Since joining this group and seeing the amount of input that is

normal for RSS kids in the states, we decided to push for more help

from a paediatrician regarding RSS as a whole, rather than as

seperate unrelated issues, which is how it has been treated up until

now. I am glad to say that an appt has finally come through with a

paed who has some experience with RSS. But now i have this

dilemma...we have never actually sat down with and explained

to him that he has Silver syndrome. He was so tiny when

first diagnosed that he would never have understood, and as he got

older, his medical input became less and less, and the different

things he was seen for were treated as seperate and unrelated.

Consequently we never talked about it. Now i dont know how to bring

it up. With hindsight it is obviously foolish that we never

discussed it with him, but this was not a conscious choice, it just

never seemed to come up, and they get big so quick.

Now is 8 1/2, he has this paed appointment looming and we

need to prepare him in advance. But how do we do it? How much does

he know already? Im sure he took in some information when he was

younger, but have no way of knowing how much. I just have no idea of

the best way to approach this. Any advice would be much appriciated.

On a completely unrelated issue, I am heavily pregnant with

Kaulbach number three, who was actually due on the 27th feb and it

is also my eldest daughters 10th birthday today so consequently i am

a tad stressed all round. So sorry if this mail is a bit disjointed.

Thanks for any help.xxx Lizzy K. Mum to Jessie now 10, 8 1/2

RSS and big bump (please come soon)

March 7, 2006

Hi Lizzy,

I was wondering if you can get to London to see one of the leading

RSS specialists in the world? Dr Stanhope is a paediatric

endocrinologist who practices out of Great Ormand Street Hospital

and has an incredible knowledge of RSS and SGA children. He also

has a very good bedside manner and is a great advocate for ensuring

that RSS children get the treatment they need to keep them healthy.

I would highly recommend asking your paediatrician for a referral to

Dr Stanhope if there is any way you think you could see him.

Besides treatment for young children, as your son gets older, there

are very important issues concerning puberty and RSS children that

many specialists are not aware of (even at age 8 1/2, you should

start watching for signs of early puberty). Dr Stanhope would also

be able to give you lots of info about GHT if you're interested.

You may not have been offered this option yet, but the UK system

gives individual specialists discretion over which patients are

eligible for treatment - Dr Stanhope would be able to examine your

son and talk to you about this option.

Even if there is a long wait to get an appointment, perhaps your

paediatrician could help you get an earlier appointment since your

son is a bit older. Glad to hear that is doing so well ...

hope you can get the information you need.

Best wishes,

(Tyler's mum - we had a very nice talk with Dr Stanhope in

Chicago 2 years ago as he was helping us negotiate the New Zealand

health system)

>

> I have a dilemma regarding my son (8 1/2yrs RSS) For those

of

> you who dont know us, luckily has RSS quite mildly and has

> consequently had little medical input over the years. He has never

> had, or been offered any type of growth hormone, but at 4ft 1inch

> and weighing 3st 3oz he is doing very well regardless. His only

> medical input over the last 4yrs has been regarding his glue ear

or

> his diet issues/feeding problems/fussy eating. (call it what you

> like).

> Since joining this group and seeing the amount of input that is

> normal for RSS kids in the states, we decided to push for more

help

> from a paediatrician regarding RSS as a whole, rather than as

> seperate unrelated issues, which is how it has been treated up

until

> now. I am glad to say that an appt has finally come through with a

> paed who has some experience with RSS. But now i have this

> dilemma...we have never actually sat down with and

explained

> to him that he has Silver syndrome. He was so tiny when

> first diagnosed that he would never have understood, and as he got

> older, his medical input became less and less, and the different

> things he was seen for were treated as seperate and unrelated.

> Consequently we never talked about it. Now i dont know how to

bring

> it up. With hindsight it is obviously foolish that we never

> discussed it with him, but this was not a conscious choice, it

just

> never seemed to come up, and they get big so quick.

> Now is 8 1/2, he has this paed appointment looming and we

> need to prepare him in advance. But how do we do it? How much does

> he know already? Im sure he took in some information when he was

> younger, but have no way of knowing how much. I just have no idea

of

> the best way to approach this. Any advice would be much

appriciated.

> On a completely unrelated issue, I am heavily pregnant with

> Kaulbach number three, who was actually due on the 27th feb and it

> is also my eldest daughters 10th birthday today so consequently i

am

> a tad stressed all round. So sorry if this mail is a bit

disjointed.

> Thanks for any help.xxx Lizzy K. Mum to Jessie now 10, 8

1/2

> RSS and big bump (please come soon)

>

March 7, 2006

Hi ...one of the main reasons of getting a paed appt was to get a referral

to Dr Stanhope as soon as possible. He seems to be the one to know. We are

hoping this wont be too hard. Lizzy K.

kmwnz wrote: Hi Lizzy,