UK Disability Resource of Disabled Needs

beckypw · Joined: 11 Apr 2008 Posts: 1

Hi there

I'm new to this board and I'm auntie to baby Ruby who is now 8 weeks old and just diagnosed with Prader Willi Syndrome. I'm trying to find out as much positive and helpful information as possible for my sister who is finding it a little hard to come to terms with at the moment. These are my main questions:

- Ruby has a nose tube for feeding but has been discharged from hospital to see how she gets on. Her oral feeding is particularly bad and doesn't seem to be getting better. Her doctors are talking about putting in a gastric tube - is anyone able to offer advice on this?
- are there any special tips for helping with her suck/breathe/swallow coordination? and and tips for getting her to feed more?
- I've read a lot about growth hormone - does it make much difference?
- Are there different degrees of pws? What's the best and worse case scenario?
- Are there any conferences/groups in the UK that Ruby's parents can attend?
- Where do we find out about residential homes/respite homes specific to pws in the uk?

Sorry there are so many questions, this is so new to us and it's a little overwhelming so I'm trying to help Ruby's Mummy & Daddy as much as possible.

Many thanks
Becky

pixie · Site Admin Joined: 16 Jun 2007 Posts: 1955

Hi Becky and welcome.

I think Speeds will be the member who knows most about PWS as her son also has it.

I'm sure she will be popping in soon and maybe have some experience or advice for you to help with your neice and her parents.

I know there's websites etc. but there's nothing like the real experience of parents.
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Speeds · Posted: Fri Apr 11, 2008 4:44 pm Post subject:

Hi Becky and welcome to the forum.

I have a little boy who is now 7 who has PWS.

Let me tell you this - the feeding will get better.

Has the hospital suggested cup feeding at all - Thomas was cup fed for a few days before they managed to stabilise him to suck from a bottle.

From what I know from Thomas he was pretty easy to feed but my friend whose little girl has PWS who is also 7 took longer and she had her NG tube in for a lot longer.

I've read a lot about growth hormone - does it make much difference? - Thomas started GH at 3 years old. There is a call to start it earlier now and with more research under the Drs belts this may be possible. Thomas has done fantastic on GH and has grown to be of a comparative size to his peers.
- Are there different degrees of pws? What's the best and worse case scenario? Yes there are and the best scenario is that a peson has PWS and actually has very few features, the worse case can be that a person has very severe learning difficulties and needs constant care. Look at my photos and my signature and that is a little boy with PWS - my son Thomas - look at my Flickr album - Thomas is there a lot - I can post some baby ones too if you would like to see them.
- Are there any conferences/groups in the UK that Ruby's parents can attend? Yes - the PWS association has several. The address is http://pwsa.co.uk/
- Where do we find out about residential homes/respite homes specific to pws in the uk? Hey - she is 8 weeks old - I am still looking but there are some and they are very good (and I am sure some bad). Get her through the first few weeks and Mum and Dad too.

If they want to talk to me or email me please let me know - my email addy is karen@thehues.co.uk and my phone numbers I will pm if you would like them or Ruby's parents.

To be honest - there is a lot to take in and things do change over time. After the age of 2 you will wonder why everyone else's kids are picky and your little girl eats everything. Just be strong now and persevere with whatever method the hospital suggest to feed with and then once she is on solids make sure that you feed all the healthy stuff - nothing that you will regret later in life.

Thomas has a balanced diet now and he is very controlled weight and height wise. His learning difficulties mean that we have kept him down a year in school but others, like my friends little girl have stayed in the correct year. Thomas is learning well just slower; He walked at 2 years which is on the early side for PWS but spoke at 2 and a bit too - but with his language difficulties he is a bit behind there. Just to let you know he is at Mainstream with a 121 and now accesses most lessons with his class.

Life with PWS will be challenging but will be fun - you will have an adorable, sociable, fun loving, cheeky monkey - I am sure.

Big hugs to you and the family - and again - shout and call.

If you are localish then we can meet up - if not there wil be a PWS rep in your area. I am not a PWS rep - I actually only joined last year but my friend Sarah is the baby rep and feeding I think rep for our area - either of us will be happy to chat to you.

OK enough ramblings of a mad woman

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Karen, Dominic, Thomas, Zola and Belle

http://www.flickr.com/photos/the_hues/

Speeds · Posted: Fri Apr 11, 2008 5:20 pm Post subject:

PS - you have had a reply from Sarah on one of the US sites you have posted too.
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Karen, Dominic, Thomas, Zola and Belle

http://www.flickr.com/photos/the_hues/