Re: New to Group - Help: Alfie diagnosed RSS at 16 mths old

[Guest guest]

Hi

My name is Jody,we are in Australia, I have a son Liam who is 4.5

yrs old with RSS.

I hope you have found the Child Growth Foundation website in the UK,

it is in the links section of this website.

Also do you live close to London, Dr Stanhope an

endocrinologist, at Great Ormond Street hospital is a world expert

on RSS,and has met many of our children at the convention held every

year in Chicago.

I know there is parents on this site from England.

I hope you learn lots here.

Jody (mum to Liam RSS 4.5yrs 11kg 92cm and Cameron 7)

>

> My son Alfie is now 17 mths old, and weighs around 15lb. Although

> we were convinced Alfie had RSS much earlier we have only just had

a

> diagnosis due to my ringing the consultants in desperation because

> Alfie does not sleep.

>

> We (myself and Alfies Grandparents) have been putting butter,

> cheese, and cream in his food whenever possible to increase his

> calorie intake but have been fighting a losing battle to get help

> from dieticians and consultants (Alfie finally had an appointment

> with the dietician last week) as they know very little if at all

> about RSS which is very frustrating for us all.

>

> As we knew very little about the condition in Alfies early months

> and we did not know what to expect everything that he has achieved

> so far has been amazing - even though he is much smaller on his

left

> side he started walking two weeks ago (with and without his

special

> shoes!) We are very lucky as Alfie does eat but goes through

stages

> where he will not eat (Alfie is ill at the moment therefore he is

> not eating), we have not been given anything to increase his

> appetite.

>

> Alfie is saying a few words and doing some brilliant animal noises

> at the moment but I realise he is not at the level he would be if

he

> was not an RSS child. My daughter Macy is 4 years old (non RSS

> child) and they both play well together - in fact Alfie tries to

> copy Macy most of the time!

>

> We are from England and our only source of information has been to

> look on the internet. I would really appreciate some advice from

> other parents on how to deal with nightime feeding and of course

> what to feed Alfie, and any other information which might help us.

>

> Thank you.

>

> (Mummy to Alfie and Macy)

>

[Guest guest]

Hi Jody

Great to hear from you. Yes, I have recently been sent an

information leaflet from the Child Growth Foundation, we live north

of Endland (Lancashire) but thank you for the advice especially for

the name of the endocrinologist at Great Ormond Street Hospital, I

will now be chasing him around to the point where he will be fed up

of hearing our name!

Alfie and Macy say hello to Liam and Cameron.

Thanks again.

(Mummy to Alfie 17mths 15lb RSS, Macy 4yrs)

> >

> > My son Alfie is now 17 mths old, and weighs around 15lb.

Although

> > we were convinced Alfie had RSS much earlier we have only just

had

> a

> > diagnosis due to my ringing the consultants in desperation

because

> > Alfie does not sleep.

> >

> > We (myself and Alfies Grandparents) have been putting butter,

> > cheese, and cream in his food whenever possible to increase his

> > calorie intake but have been fighting a losing battle to get

help

> > from dieticians and consultants (Alfie finally had an

appointment

> > with the dietician last week) as they know very little if at all

> > about RSS which is very frustrating for us all.

> >

> > As we knew very little about the condition in Alfies early

months

> > and we did not know what to expect everything that he has

achieved

> > so far has been amazing - even though he is much smaller on his

> left

> > side he started walking two weeks ago (with and without his

> special

> > shoes!) We are very lucky as Alfie does eat but goes through

> stages

> > where he will not eat (Alfie is ill at the moment therefore he

is

> > not eating), we have not been given anything to increase his

> > appetite.

> >

> > Alfie is saying a few words and doing some brilliant animal

noises

> > at the moment but I realise he is not at the level he would be

if

> he

> > was not an RSS child. My daughter Macy is 4 years old (non RSS

> > child) and they both play well together - in fact Alfie tries to

> > copy Macy most of the time!

> >

> > We are from England and our only source of information has been

to

> > look on the internet. I would really appreciate some advice

from

> > other parents on how to deal with nightime feeding and of course

> > what to feed Alfie, and any other information which might help

us.

> >

> > Thank you.

> >

> > (Mummy to Alfie and Macy)

> >

>

[Guest guest]

Hi ,

Welcome to this site which is a wonderful source of support and

information. I tend to read the messages more than I post, however

your message caught my eye as you say you are in England! Where

abouts do you live?

I have a 3.8yr old daughter, , who has RSS. She is currently

90cm tall and weighs 25lbs (although prob lost weight recently as

she has a chest infection and is not eating .. sounds familiar to

you no doubt!). We live in Kingston although we are currently on the

move to St Albans, Herts.

I am also the RSS/IUGR Group Co-ordinator for the Child Growth

Foundation, a UK based charity who offer support for RSS families,

as well as other growth-related conditions. Please feel free to

contact me if you would like more information, please also check out

the website on: www.childgrowthfoundation.org - if you become a

member, then you can easily be put in touch with other families and

RSS kids/adults. The CGF also holds an annual convention, next years

is end September. It is only one day, unlike the MAGIC convention in

the US, however they do have regular speakers, including

Stanhope and Kirk (the RSS experts in England). Becoming a

member of MAGIC is also a great way to get information and facts,

and copies of medical papers.

It would be great to hear about Alfie, he sounds like he is doing

really well, it's great that he eats, although I can completely

understand what you mean about not eating when he gets sick! That is

very similar to .

We add Duocal powder to 's milk - she is on Nutrini Hi-Energy

and stil has 3 bottles (150mls each) per day. We're just waiting for

her to not want these, I'm dreading it as it is a source of such

nutrition .. we might try again on the milkshakes I think.

Anyway, I am sure you wil get a lot of other advice from people

here, it is a great community. And please feel free to get in touch

if you do want more info on the CGF, my email is above.

With best regards

Rae, mum to , RSS, 2.8yrs, 90cm, 25lbs

London, UK

>

> My son Alfie is now 17 mths old, and weighs around 15lb. Although

> we were convinced Alfie had RSS much earlier we have only just had

a

> diagnosis due to my ringing the consultants in desperation because

> Alfie does not sleep.

>

> We (myself and Alfies Grandparents) have been putting butter,

> cheese, and cream in his food whenever possible to increase his

> calorie intake but have been fighting a losing battle to get help

> from dieticians and consultants (Alfie finally had an appointment

> with the dietician last week) as they know very little if at all

> about RSS which is very frustrating for us all.

>

> As we knew very little about the condition in Alfies early months

> and we did not know what to expect everything that he has achieved

> so far has been amazing - even though he is much smaller on his

left

> side he started walking two weeks ago (with and without his

special

> shoes!) We are very lucky as Alfie does eat but goes through

stages

> where he will not eat (Alfie is ill at the moment therefore he is

> not eating), we have not been given anything to increase his

> appetite.

>

> Alfie is saying a few words and doing some brilliant animal noises

> at the moment but I realise he is not at the level he would be if

he

> was not an RSS child. My daughter Macy is 4 years old (non RSS

> child) and they both play well together - in fact Alfie tries to

> copy Macy most of the time!

>

> We are from England and our only source of information has been to

> look on the internet. I would really appreciate some advice from

> other parents on how to deal with nightime feeding and of course

> what to feed Alfie, and any other information which might help us.

>

> Thank you.

>

> (Mummy to Alfie and Macy)

>

[Guest guest]

- welcome. You have definately come to the right place. I

haven't read the other posts yet - but, if it hasn't already been

mentioned - MAGIC Foundation has a website and has a great deal of

information that may be of help to you. As far as the eating

issues - UGH - definately one of our worst issues I think to deal

with. My son is 2.5 and they get even pickier it seems. If it's

not a donut or chocolate - he doesn't want it! LOL When he was

younger - things we tried and work were: heavy whipping cream in

milk, cream cheese and salami, nutritional supplement (Nutren, Jr -

250 calories in 8 oz), and actually - some of the other things you

mentioned we did as well. Sounds to me like you are doing a

fantastic job. I hope you will keep us posted.

- H

>

> My son Alfie is now 17 mths old, and weighs around 15lb. Although

> we were convinced Alfie had RSS much earlier we have only just had

a

> diagnosis due to my ringing the consultants in desperation because

> Alfie does not sleep.

>

> We (myself and Alfies Grandparents) have been putting butter,

> cheese, and cream in his food whenever possible to increase his

> calorie intake but have been fighting a losing battle to get help

> from dieticians and consultants (Alfie finally had an appointment

> with the dietician last week) as they know very little if at all

> about RSS which is very frustrating for us all.

>

> As we knew very little about the condition in Alfies early months

> and we did not know what to expect everything that he has achieved

> so far has been amazing - even though he is much smaller on his

left

> side he started walking two weeks ago (with and without his

special

> shoes!) We are very lucky as Alfie does eat but goes through

stages

> where he will not eat (Alfie is ill at the moment therefore he is

> not eating), we have not been given anything to increase his

> appetite.

>

> Alfie is saying a few words and doing some brilliant animal noises

> at the moment but I realise he is not at the level he would be if

he

> was not an RSS child. My daughter Macy is 4 years old (non RSS

> child) and they both play well together - in fact Alfie tries to

> copy Macy most of the time!

>

> We are from England and our only source of information has been to

> look on the internet. I would really appreciate some advice from

> other parents on how to deal with nightime feeding and of course

> what to feed Alfie, and any other information which might help us.

>

> Thank you.

>

> (Mummy to Alfie and Macy)

>