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

[Guest guest]

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)