(no subject)

[Guest guest]

Dear

I nearly slept last night and I feel so much better - every day I am gaining

a little more strength and I am going to knock it to them!

My daughter, as I mentioned, is nine months old. From early on in my

pregnancy I have received no help at all. Due to my referral to the hospital

for appointments I never even had a midwife or any ante-natal counselling.

Since being discharged from hospital with a 3lb odd baby who wouldn't feed I

was left alone to fend for myself - I was a new mother with little or no

confidence - she didn't do what it said they do in the books. I had no

family to help out and friends and neighbours couldn't understand that such a

beautiful little baby could cause me so many problems. I felt incompetent -

I had no sleep - so I asked a neighbour to watch my baby for a while so I

could sleep - she was a confident mother of two and a ''voice' in the

neighbourhood - she brought my baby back after only a couple of hours saying

she couldn't cope with her - that made me feel better! It restored the

little confidence I had in my abilities.

I say nobody knows what it is like to cope with what seemed like permenant

feeding 14 - 16 bottles a day 1 or 2 oz at a time 6 - 8 bottles a night! but

maybe some people on this list will remember the early days like this.

Over time, at about 4 months she started going every 2 hours - WOW at five

months came out of premature clothes and diapers.

I empathize with you totally when you say that the health professionals do

not know enough about RSS. It almost seems our case was too difficult to

take on - no one wanted to do anything about it because it was so unusual - I

still feel the same - I am so sick and tired of them saying she'll probably

catch up, or she may just be small and come back in 3 months. I have a

problem understanding how we could have such a small child when I am tall and

dad is really tall, both from stocky backgrounds with no adverse medical

history. I believe there is a problem, isn't it obvious when you look at my

daughter - she's so small! So why don't they do something about it - Sorry,

yes they are - they do some more tests and then I go back in three months -

nothing is conclusive so do some more tests and come back in three months. I

wonder what will happen when I go back next? Don't worry that is what I'm

psyching myself up for - ACTION!

We are based over in the UK - I gather from the list that many of you are

based in the US where things are different. I do have to decipher some of

your terminology and abbreviations. I find the group so helpful but feel I

need some support from this side of the atlantic - I have been in contact

with the HGF in London and they will help support my case. I do not have any

endos or GIs or big people working on our case but we are entitled and so

when I go to the Peads on Monday I will insist on a referral to a Endo or

Genetisist who is an expert in RSS and not just aware of the condition or

maybe come across it once or twice in their career. If I gather my strength

and fight I will get action - It hurts so much that everything is a fight to

get what we need.

If anyone else, or you , are still awake by the time you get this far

down - could you please tell me of your early experiences - were they like

mine?

Love, luck and thanks to you all

P.S. I'm working on putting some pictures in the gallery - watch this

space!!!