hemihypertrophy and BWS

[Alina_n]

My son has 3 years old age and he has BWS. We didn't know about this syndrom until now.

We received the results from genetic test a month ago. He has hemihypertrophy ( the entire right side is a little bigger in circumference than the left side. Is more visible to the right cheek - more prominent. He is not speaking for his age too much--just 15-20 words. I do not know if this is related to the syndrome or not. We are making from now one abdominal screening at 3 months and blood test at 3 months.

We are living in Romania, Timisoara, in this city there are only 3 case with this syndrome, and the doctor does;t have much experience in this way.

[charlilriley]

Hi there, my son is 2 nearly 2 and a half...has bws and hemi right side, but crosses at the head to left side, large tongue but not hugely so, no reduction, has strawberry mark forehead and enlarged organs plus kidney problems....how you all doing?? nerve racking isnt it??

[charlilriley]

Also my son has speech issues plus eating issues and attachment issues....x