BWS Support

BWS Support

BWS Support

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

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  • My daughter was 2 months early and spent a month in the nicu , we found she has bws enlarged tongue , he also failed her hearing test...

    By 7 Replies
  • Have had an enquiry from a parent whose child has BWS and has this problem. Is bedwetting common in BWS children beyond the age of around...

    By 1 Reply
  • Hi , my sons (15 months old)tongue is described as moderate macroglossia his plastic surgeon says he will grow into it? At the moment his...

    By 3 Replies
  • New dx of bws ( its my neice ) she is 3 weeks old and was dx right away . We live in Southern California any info would be most helpful

  • Hello, I'm new to the group. My son is 15 now and he's having a lot of back pain. He hasn't really presented with any issues from BWS...

    By 2 Replies
  • Hi there, My son is 14 months old and I've always been worried his tongue is too large for his mouth. He very rarely seems to close his...

    By 7 Replies
  • Hi all, I'm so glad I stumbled across this support group. It's wonderful to read all your posts and I feel comfort in knowing there are so...

    By 4 Replies
  • My brother is 40, he has BWS, he has an extremely large tongue but decided against surgery. It doesnt affect him greatly to be honest. The...

    By 1 Reply
  • Have just been contacted by a journalist who wants to write a case study about a BWS child. The article is likely to go into a range of...

  • Hi all, my 13 month old baby boy was diagnosed 1 month ago. His first scan is next week, can anyone tell me if he needs to be fasting for...

    By 11 Replies
  • Our daughter was diagnosed with BWS when she was 8 weeks old. We were told at our initial consultant appointment that she would have blood...

    By 13 Replies
  • http://www.mirror.co.uk/news/real-life-stories/girl-aged-7-towers-above-6435410

    By 2 Replies
  • please watch Bbc 2 at 9pm tonight to watch out daughter nell who has BWS on the extraordinary making of you

    By 2 Replies
  • Hi, We're new here. Our 19 month old is currently being tested for BWS and we're out of our heads with worry. It all started with Endo...

    By 6 Replies
  • 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 4 Replies
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