Epispadias

[mumball]

My Ds was born with severe Epispadias, he is four now and still in nappies (he has hemiplegia as well). I was wondering if anybodies children had any pain post-operation it's been nearly two years since his operation, but he still gets very upset at nappy changing, and says it hurts him to be touched around that area, won't even touch himself. His consultant says he's not in pain and that it is a behavioural problem, but from what DS says I am not convinced, we seem to be passed from different hosp departments with our local hospital and apart from a once a year visit, GOSH don't really seem to care, consultant didn't offer to refer him to anyone for his problem. Any advice anyone?

oh so no - one has a child with epispadias then?

Sorry mumball - I haven't come across anyone on here whose child has this problem. I hope you get some advice though.

Hi mumball, I'm afraid I can't think of anyone who has ever posted about having a child with this condition either, sorry. But I am so angry for you and ds, I hate it when anyone doesn't take a child's feelings of pain or discomfort seriously enough. Bit of a nasty hangover from the days when babies underwent procedures without sufficient anaesthesia because doctors knew they didn't suffer pain like adults do .
I just wondered if you had a supportive health visitor who could take up your concerns with the hospital, or at least ask to be referred back to GOSH sooner than your next annual appointment. Or if the PALS Office (Patients Advocacy and Liaison Service) was any good at your local hospital. This is supposed to help patients sort out differences of opinion or unhappiness with treatment in a constructive way.
I expect some of us will keep bumping you today in the hope of there being a fellow epispadias parent out there :)

Thanks everyone, I am not going to let it drop. Will keep on at them all!