Hi I'm Josh, my daughter has BWS. She was born with omphalocele, has large tongue, ear crease, and really tall for her age. I'm so worried about her. I've stopped seeing her pedia because he's never said anything helpful. I feel like my baby is the only person in our country who has this syndrome. I have lots of questions in my mind, i have no idea what to ask first or what. I've read posts from other members and I feel a bit relieved.
Another worry that I have is that of having developmental delays; do all children with BWS have developmental delays? or what is the incidence of BWS children having developmental delays? Do you think tongue size will be at its normal size soon? like could it be possible for it to just fall into place and wont need a surgery?
My baby's tongue right now looks like that at the picture; I have lots of questions and I dont which one to ask so can you tell me something about her tongue? Do tongues this size at this age will get bigger as she grows?
Hi,
Sorry to hear that you've lost faith in your paediatrician. I know the feeling, often I feel like I know more about my sons condition than the health professionals.
Where are you based? How old is your beautiful little girl now?
My son has just turned one. I'm afraid I don't have the answers you were maybe hoping for on tongue size.
All the stuff I've read over the past 18 months or so suggests that like the overgrowth, no one really knows or can predict what's going to happen.
But there is a specialist clinic at Great Ormond Street Hospital in London. It's a macroglossia (large tongue) in Beckwith-Weidemann Syndrome clinic. It's run by speech and language therapy, but with surgeons and orthodontic involvement at the same time. So that the different disciplines can look at the child and work out the best way to help.
We haven't seen them yet, we are due to go in March, but I'm hopeful they can help. They're such a specialist clinic, but have seen a couple of hundred children with these symptoms, as it's rare it's a big hope they may know what to do.
My son doesn't have any developmental issues aside from his feeding. So sorry I'm not able to help with that.
The best advice I can give you is to use sites like this, or to search online for BWS and whatever symptom you're interested in, there's lots of shared experiences and clinic papers etc out there. Just