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Hi all, I am not a sufferer of crps, but my 15 year old son is, I have joined this group to try and gain some advice. We are in the UK, so the advice I am looking for will primarily (at this point) come from sufferers with this awful condition come from this country.
About 6 years ago my son was diagnosed with juvenile idiopathic arthritis, after about 3 years this fortunately went into remission, but it left him with chronic pain, he was under Leicester pain clinic for this for a while, he used lignocaine patches which helped a little bit, but mainly he managed it himself with pain killers and rest.... Up until about 3 weeks ago! Basically that day he woke with severe pain in both his ankles, both knees, and his groin, to the point where he could not move any of his joints at all, not only that but you couldn't even touch the joints without him screaming out... So we got the ambulance to take him in hospital, thinking maybe his arthritis had started up again.
Once at hospital the arthritis was ruled out and the consultant diagnosed him with crps... But unfortunately the doctors at Lincoln hospital have never dealt with this before, so they are in the dark how to deal with it. Numerous phone calls to Leicester, Sheffield and great ormand Street paediatric pain clinics ensued, for advice. Physio, counselling, pain management medication & desensitisation programs was what they were told.
Unfortunately Lincoln hospital can only give him physio, as the other services are not available there... Lincoln were advised to try my son on ametrypoline, but this gave him vivid nightmares so he was taken off it, they then tried gavapentin, which also gave him vivid night terrors, so that too had to be stopped.... But they haven't started him on anything else as they are not sure how to deal with it. Leicester, Sheffield and Great ormand Street only do paediatric outpatient appointments to their pain clinic, and the earliest any of them can offer is 7 months away!! !.
My son needs inpatient transfer to a paediatric hospital that deals with this not as an outpatient as clearly with my son not able to bend his legs, or even walk on them this is impossible.,but as an inpatient.
So my question is. Does anyone in the UK know any paediatric hospital that deals with children's pain as an inpatient, so he could be transferred from Lincoln to somewhere that knows how to deal with crps, that is all under one roof.
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