A community dedicated to supporting those with Beckwith-Wiedemann Syndrome (BWS), which is an overgrowth disorder.Read more
BobBaker11 days ago
COngratulations on the birth of your daughter. Our son Tom has BWS and is now 33 with three lovely children of his own. If you live in the U...
Jomalou11 days ago
Hi!!!I'm new at the group!!+My daughter was diagnosed with BWS she is 7months old now!!!I'm so happy to found this group !so looking forward...
KimHarris16 days ago
I was born on April 11, 1992 at Home Hospital in Lafayette, Indiana and i weighted 14lbs and 14ozs and i was 3 weeks early and had a 50/50 c...
Related health issues?
Rmgallup23 days ago
My daughter has bws. And has been hospitalized. Several times now. Doctors think something is wrong with her lungs but have no answers. Doct...
Need help finding a doctor
I am in search of the best pediatricians. With bws expertise.
New to BWS
amandamiadan2 months ago
Hi im new here. My baby girl is 3 months old. When I had my 12 week pregnancy scan we were told she had Examphalous. She was born 20 novembe...
BWS child, now age 25
Hidden2 months ago
I thought I would share my story, as it has a happy conclusion.
I was born in 1990, 2 months prematurely. I was diagnosed with BWS before bir...
The AFP testing
BritneyMariah3 months ago
My daughter is 4 months now and when born we found out she was diagnosed with BWS. With BWS an ultrasound screening and AFP testing is done ...
Beck with wiedemann syndrome
Ar01yan3 months ago
I got a baby boy on 14/11/15.
He born with ompholocele minor(only small intestine was outside in a SAC). Baby went through an surgery for th...
Newly dx bws in philly area
Bckagafw3 months ago
I'm from the Philly area and my daughter is going through genetic testing for bws. I'm looking for a local support group or if there is anyo...
Hidden3 months ago
My son at two was diagnosed with a whilms tumor on his kidney. He underwent six months of weekly chemo and surgery. His chemo finished this ...
Has anyone claimed DLA successfully for a child with BWS and Hemihypertrophy. My youngest child will be 2 in March 2016 and I have tried to ...
First time with bws
Angela19855 months ago
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 , th...
BWS and Bedwetting
BobBaker5 months ago
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 4 ...
Tongue wait and see?
Hidden5 months ago
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 te...
Sabria6 months ago
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
Be the first to reply
AkRosanna6 months ago
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 sin...
Vicky9826 months ago
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 mout...
New here, hello!
Hidden6 months ago
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 m...
Adult with BWS
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 o...
BobBaker7 months ago
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 news...
Ultrasound and fasting
Hidden7 months ago
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 th...
Blood tests and ultrasounds
Anna-Lisa7 months ago
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 t...
Kitty20138 months ago
please watch Bbc 2 at 9pm tonight to watch out daughter nell who has BWS on the extraordinary making of you
Hidden8 months ago
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 tes...
Amh228 months ago
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 5 liv...
Giggyblonde8 months ago
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...
Nina-Dennis9 months ago
does your ultrasound person who does ultrasound to your child ask you any questions during the ultrasound! ? like: how you notice ever one s...
Kitty20139 months ago
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 Septe...
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