BWS Support
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Bws and adhd?

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.

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I am not sure ADHD is associated with BWS, but we do read some papers suggesting the anesthesia in infancy or baby period may contribute to children's behavior change in later life.

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Apologies for not replying sooner. We are not aware of any link between ADHD and BWS. Our son did have some behavioural problems when he was younger. He had temper tantrums and as he was quite strong it was difficult to control at times. Things such as loud noises, failure and change upset him. We think that this was just his temperament and not related to BWS. This is an area where I think more research is needed as the European wide consensus meeting for BWS held last year concentrated on the physical aspects of BWS. It's good that your son is coping well at school. Our son is now 35 and he doesn't remember much about the round of hospital visits which is a good thing. He had his tongue reduction performed when he was 20 months old and doesn't remember this at all. Have you had a look at the BWS stories on our website? It can be found at bwssupport.com It's always good to hear other families' experience.

Hope this is a helpful reply and our best wishes to you and your family.

Bob Baker

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Thank you Bob for your reply.

The professionals we have consulted don’t think he has ADHD but they are working on the hypothesis that all the operations and proding and poking is traumatic in a young mind and brain and this can have impact on emotional development. Of course it could be his natural temperament we will never know for sure but it could very well have exacerbated those traits further. I think this is an important area for further research.

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