Unknown pain source and management

CymruClarke

Hi all,

My daughter is 23 and has severe cerebral palsy. Earlier this year she started displaying unusual symptoms where she would twist around in her seating and be generally unsettled. This has progressively got worse as the months have progressed and has developed into bouts of screaming and sweating in what appears to be waves of pain. More recently she has spent 5 weeks in hospital while undergoing investigations (she is non-verbal and unable to communicate or indicate the source of the pain). The hospital have undertaken X-rays,  a CT scan, ultrasounds, taken bloods and other samples but can’t find a source for the pain. She is now on oxicodone for the pain together with midazolam but they don’t seem to be really helping. At one point they even moved her to palliative care as thought she was end of life as the reactions to the pain were so bad. 4 days later they decided she didn’t need palliative care. No one in our hospital is a CP expert so we rely on different doctors from different disciplines to treat their respective areas. We personally think this lack of focus on CP as the route cause is an issue but they don’t think it is. How do others have their CP ‘overseen’? Also, what else can we insist they look into to try and help isolate the source as we’re struggling. Thanks.

Karen7788

I’m not knowledgeable about this @CymruClarke, but have you asked if your daughter can be referred to another hospital where they do have a specialist in this area.
I hope that your daughter gets the help she needs as it must be very distressing.

CymruClarke

@Karen7788 Thanks for the reply. We’ve suggested that to her current doctors but they don’t know of anybody suitable. They admit that services for CP patients dwindle when they leave paediatrics. We’re in South Wales so if anybody knows of anyone that would be a great help.

janer1967

I will tag in our cp adviser maybe he can help @Richard_Scope