BWS Support

BWS Support

BWS Support

A community dedicated to supporting those with Beckwith-Wiedemann Syndrome (BWS), which is an overgrowth disorder.Read more

Top posts this monthAll posts

  • Hi, my baby is 3 month old. The AFP decresed from 54000 to 19000 in only 2 months that is good, but her US was really bad. They found...

    By 2 Replies
  • Hello, I'm new to the forum! My 15 month old son was reffered to pedeatrics 8 months ago after his GP noticed he had been completely off the...

    By 3 Replies
  • does your ultrasound person who does ultrasound to your child ask you any questions during the ultrasound! ? like: how you notice ever one...

    By 1 Reply
  • My daughter is 7 years old had has BWS. We have been fming with the BBC for Horizon and the programme is due to air at the beginning of...

    By 5 Replies
  • Hidden

    Hi, I am new to this community and was wondering if you could tell me your experiences of how long you had to wAit to get the results if the...

    By 4 Replies
  • Great Ormond Street Hospital have produced a new information sheet on BWS. It includes the long awaited information on genetics and...

    By 2 Replies
  • Hi, I am mom of a 2 month baby girl with BWS. She was born at 31 weeks (7 months). After 6 weeks at the NICU, she was released at home on...

    By 6 Replies
  • Hello! I'm hoping to connect with others that have children with BWS. My 3 month old was diagnosed six weeks ago. He has macroglossia...

    By 10 Replies
  • Hi, I'm a newbie here with my first post, I have a 1year and 20month old baby girl born with BWS and HI (Congenital Hyperinsulinism). At the...

    By 7 Replies
  • Hi i have 2 grown men in there late twenties with BWS who have had various health problems in there liftime and to this day my youngest who...

    By 6 Replies
  • If genetic testing comes back negative what are the next steps? Is it possible to have bws and it not show up? Also should doctors still...

    By 10 Replies
  • hi, I'm posting with hope of some answered questions about my daughter. as from the very first scan during pregnancy we were told out baby...

    By 1 Reply
  • Hidden

    Hello, my son is 7 months old and we are currently undergoing genetic testing to find out if he does indeed have BWS. He seems to be a bit...

    By 3 Replies
  • Hi there I have a 2 year old boy who has bws he also had his bowels on the outside he has had 3 operations to repair his bowels also a...

  • Anyone please advise me some heart speacalist and liver cancer speacaliat for bws baby's

    By 2 Replies
View all posts