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 July 7. She has macroglossia (not too much), a hemangioma mid scalp, an small umbilical hernia, and her right leg is circumference is larger than left (0.5 cm) the long is the same for both legs. I live in Houston (TX, US). I want to know if anybody knows a specialized center for BW in the USA. All information I found is for UK.
She eats very well, but she is pushing all time trying to do poo poo and has a lot of gasses. The doctor did not give me any solution. She makes rare sounds during the night, and I am scare she has breath problems because of her tongue. How can I know if she breaths very well during the night?
Thanks.
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Amh22
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BWS children often suffer with constipation due to weak abdominal muscles. My son had terrible problems and we had to get a referral to a gastroenterologist for medication, which he stayed on till he was about seven. The problem gets worse if it's not treated as the children hold onto their poo knowing it will hurt which just exacerbates the problem. Don't be fobbed off by people telling you it is poor diet, make sure you get a good assessment. Movicol is the best medication and you can titrate it depending on how much they need and then gradually reduce it over a number of years.
If you are really concerned about her breathing at night talk to your paediatrician about a sleep study.
She will need to be assessed by a specialised craniofacial team for her tongue.
Hopefully someone here knows about good centres in the US.
Hi - are you on Facebook at all? There are a few groups on there with lots of people from the U.S. Who would be able to give you information about centres or doctors etc local to you. I'm in the UK so I can't really advise but if you search for bws groups or beckwith wiedemann syndrome groups, you should find something on there if you don't get any replies on here xx
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Questions
macroglossia
Is it BWS?
Blood tests and ultrasounds
Beckwith Wiedemann Syndrome