Prader willi

[Hellenbach]

My 4 week old DS2 was diagnosed with P.W this week. I have a little information from the doctor (he was crap) and I have called the PWSA who were lovely and are sending info.
I am still not ready to go online and read about the whole deal. I just wanted to make contact with other parents out there. I am in north London. I have another DS aged nearly 4 years. My husband has long term health issues. I am feeling really overwhelmed by this.

My Ds does not have PW but we know a little girl who does, she is lovely, very happy and walking, and talking normally. The main thing is obviously the dietary side but her parents seem to have that under control and I have never seen the girl (who is now 6) eat anything without checking first, and if she is told 'no' she hands it over without a fuss!

good luck with it all - it is very early days and I'm not surprised you are feeling overwhelmed, give yourself time to get used to this as not only do you have a new baby and all the worry that that brings but the extra, unknown quantity of a diagnosis brings so much extra worry with it.

Keep posting here - there are lots of people with knowledge and a supporting ear

my girls dont have it either but used to look after a boy with this too. He has a lovely boy but didnt need to have supervision all day and trips out were carefully planned, however, he wasnt unmanageable and would hand over things when asked.
Give yourself time to let it soak in and remember they are all indivuals and so you'll find your own way of helping your chjild.

HTH

I have no experience of PW but wanted to say, come on here anytime, there is always someone to talk to about the issues that come up. Sorry to hear your dh is poorly too - you've a lot on your plate.

As HairyMaclary says, give yourself time.

hi Hellenbach.
Congratulations!!
I work with a lady with PW, she is a very able indipendent person, she has her own flat & has had the same job for about the last 10 yr or so, a happy, healthy tax paying adult just like you & I.

My ds2 doesn't have PW he has other dx but can remember all that early confusion & mixture of feelings.
Don't be hard on yourself, take time for you & enjoy your ds for the lovely little bundle that I am sure he is.

I used to work with a lad with PW he is now at college doing catering & has worked v hard to control his eating & diet. He is living at home but fairly independant

Thank you all so much for your positive posts. I've been a mumsnetter for a few years now and never thought I would be posting on the Special Needs thread. But thank god you are here! I will certainly be needing you all x

Dear Helli
So glad you have found support here. Nobody on the SN thread EVER thought they would be posting here! lol. But you'll find we're all just

Mums and Dads
Grandparents
and our children are first and foremost
Children

Dont worry about PWS - saw a fab programme about children coping with the eating side of things and they were just brilliant

Hi Helen I have a five year old son with PWS. I would be happy to chat anytime you want. The PWSA have lots of useful info and also a forum where parents can chat, everyone is very friendly.

Hi Chorlton. It would be good to chat to you. I am waiting to hear back from PWSA about local parents too. How do we exchange contact details?

Hi Helen, I tried to contact you by clicking on "contact poster" but it wouldnt allow me, can you try to see if you can contact me this way? If not I'll need to ask in the wider forum as I am a new member to mumsnet. Let me know how you get on.

I have two children and my youngest,aged 6 has PWS. We live in West Cornwall.
He is a lovely, happy little boy who attends mainstream school and enjoys horse riding and swimming. It isn't easy, you are learning all the time. However, like all children he is a joy.
Feel free to get in touch if you think I can be of any help.

Hi there,
I have daughter with pws and she just turns 18 this year. She attends college during the week and works part-time at the weekend. I'm writing this to see if you know any parents who have a child similar age to my daughter? So we can talk /share about our life experiences. Thanking you in advance.

My son has PWS - he is sixteen. Very happy to chat if you want to send me a message.

Hello, is anyone still active on here that their child has prader Willi syndrome? My daughter got diagnosed today at 3 weeks old. Would really love to talk through other experiences or to link in with other parents.