I have a 7 year old son with bws who was diagnosed a few months after birth. He had successful operation at birth to put bowel back in and tongue reduction aged 13 months as well is operation on undecended testes. He is now healthy and just like any other kid.
However we have always had difficulties with managing his behaviour, he is hyperactive, has difficulties managing his emotions, low frustration tolerance always pushing boundaries, likes to feel in control and needs constant attention etc. However he manages school well and he seems to be very bright and school don’t report problems as he loves learning and is well engaged and stimulated which is what he constantly seems to need and craves. The only issue at school is he always wants to answer everyone else’s questions.
He has been assessed by a reputable child psychotherapist and has play therapy once per week and we have parent sessions but I do wonder whether he needs to be assessed for ADHD.
I don’t think there is an established link between bws and adhd but I wonder whether others have similar issues. I also wonder whether all the medical intervention he had will have impact on his emotional development.