I have a little boy with BWS and also has hemihypertrophy but only isolated to his left leg he doesnt have any other enlargement to any

[hannahwelshy84]

Other part of his body, is there anyone who has a child in the same situation??

[Mrslager]

Are you on facebook? There's a brilliant private group on there with lots of family's and brilliant advise x

[hannahwelshy84 in reply to Mrslager]

Yeah I am on facebook, whats it calles the group? X

[Songbird63 Administrator BWS Support in reply to Mrslager]

Please be aware that the Facebook page mentioned here is not part of this support group.

[bishbosh in reply to Mrslager]

I can't find the Facebook group either. Please can I be added. My name is Patricia Kinoulty Malone. Thanks

[hannahwelshy84 in reply to bishbosh]

Type in the search bar beckwith weideman syndrome it should come up it took me once or twice to find it x

[Mrslager]

It's called beckwith weideman syndrome. My names Amy harbour, I'll look out for you xxx

[hannahwelshy84 in reply to Mrslager]

Is there any chance you could add me to the group my names hannah blight, my profile pic is of me and my boy, I just tried looking for the group and cant find it xx

[jaspers_mummy in reply to Mrslager]

Im interested in this too.... But just like hannah I.cant find you... Please could you add me too? My name is holly hoogenboom... Thanking you in advance

[jaspers_mummy]

Im in a very similar position, my little boy was diagnosed just before his 1 birthday. It took such a long time for him to be diagnosed because they first suspected that he had something wrong with his hips. But hes coping really well, he is determined to walk even if it is a little more difficult for him than it is with other children of a similar age. We recently went to see a specialist about his legs, and although there is a difference they aee reluctant to do anything just yet... We have to go back regularly to have his legs measured..to keep an eye on it.

Have you been to see anyone?

[beckwith]

my daughter also had the overgrowth on one side, age 11yrs she had the growth destroyed in leg leg just above the knee,in girls their legs grow until they r 14yrs then their backs grow after that, yes I am pleased to say it worked that they r pretty much the same size in length now , but they cannot help the thickness x

[hannahwelshy84 in reply to beckwith]

How much longer was your little girls leg? At the momemt my boy is 3 and its only 2cm but they said that if it does grow longer then we will have to look at a lift for his shoe and an op when he is a bit older, did your little girl cope ok until she had the op to adjust it? Xx

[hannahwelshy84 in reply to beckwith]

I have replied did you get it? Xx

[jjj71]

My daughter has hemihypertrophy on her right leg and abdomen. She is 7 months. The geneticist initially ruled out bws but has written to me today to say she wants to do another test for bws to check if gene is carrying a misprint.We have to wait 8 weeks.

[jaspers_mummy in reply to jjj71]

Keep strong, i remember having to wait for those results..