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Behaviour/development

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Son may have Prader Willi Syndrome

6 replies

Danmufc · 09/04/2019 13:00

Our son 4 months has been gaining weight rapidly currently weighs 20lbs we were referred by the health visitor to the doctor who referred us to the paediatrician as he was worried about weight gained and the size of his head. At the appointment yesterday we were shocked to discover they think he has PWS so blood test has been done but we just don't understand as he's so alert always smiling, babbling away starting to roll over on his own does anyone have any experience of this?

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dementedpixie · 09/04/2019 13:07

www.nhs.uk/conditions/prader-willi-syndrome/symptoms/ do any of these apply? My ds was 21lbs at 23 weeks and nothing was said. PWS is usually noticed sooner according to the link

Danmufc · 09/04/2019 13:57

He barely has any of them symptoms, he is quite strong particularly in his legs and does resist when he's leaning back as if he's trying to sit up on his own but paediatrician says he's floppy we disagree with that, he goes cross eyed occasionally but that's about it apart from the weight gain.

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dementedpixie · 09/04/2019 14:00

I suppose they need to check but lots of babies put on weight quickly and go a bit cross eyed at times so I'd try not to worry too much. Given the NHS link you'd expect it to be picked up earlier than this

Danmufc · 09/04/2019 14:15

Yeh very hard not to worry just a waiting game now and hope for positive news.

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Notsurewhat1981 · 09/04/2019 14:53

Hi there just wanted to give you a virtual hug. I don't know the answer I'm afraid but I'm glad they are looking into things for you. My lass weighed 15.5 at that age and wasn't doing anything, no rolling etc etc missed all her milestones n just carried on piling on weight. As happens she was just lazy and greedy and still is but was 2yrs of torture. I just pray he's the same for you x did his head measure abnormally big, just if he's all over big but in proportion that's a good sign

Zipzap00 · 13/09/2021 13:05

I would like to have my son tested for Prader Willi syndrome. Does anyone know if genetic testing for this can be done privately in the UK?

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