Son diagnosed with crps, need to get him help.

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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.

Thanks

Nick

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12 Replies

  • Posted

    Hi Nick sorry to hear about your son   I am in Ireland.  Calmare therapy would help him. They use innusa but also have a doctor in Ireland who does it. In Kilkenny would be around 2000 Euro I think.  Google it and have a look.  As it’s early crps you might have chance getting it into remission. 

    Also cbd oil. Try cbd brothers. It’s uk company.  It could help pain for him.  All legal in uk Ireland.  

    I also tried those drugs and gave me horrible side effects.  

    Diet is very important.  

    Lots of info onnyou tube search crps diet etc.   in my experience the following. Increase my pain. Any dairy related products milk etc.  all gluten wheat.  All processed food and bad fats and sugar.  If you can get him onto a good clean diet plenty veg and fruit. Not sure what he eats.  Any caffeine also is bad like even in coke etc. 

    Epsom salt baths are a life saver for me. They decrease the pain. I would suggest a bath every evening to start with two cups of salts. You can get big drums of it in chemist.  Paracetamol can be quite effective.  It’s over looked a lot.  

    Pacing is very important.  

    I know there is a specialist hospital in Bath UK that deals with crps.  

    Also. Facebook group called this it might help you also it’s uk based.  

    CRPS UK - Living With Pain 

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    • Posted

      Thanks for your reply, the calmare therapy looks interesting... The only problem is he is bedridden because of the pain when he tries to move his legs, so we wouldn't be able to get him there...

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    • Posted

      The less he moves the worse he will get.  Try he Epsom salt baths to start. They should gently release stiffness and physio needs to work with him ASAP.  Diet baths got me moving. Not drugs., excerpt for ketamine.  That has helped my face crps.  
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    • Posted

      Unfortunately we wouldn't be able to get him in a bath, water running down his legs in a sit down shower is agony for him. We managed to get him in a wheelchair the other day, to push him outside for some air, and it started to spit with rain... And believe it or not just a couple of rain drops on his legs (he had shorts on) was to much for him, the pain was unbearable for him!... So there is no way we can get him in a bath.. In fact after his last shower attempt we won't get him in the shower again, he went into shock with the pain!

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    • Posted

      He is not on any meds, except pain killers that the hospital give him (paracetamol, ibuprofen, and orimorph when they decide to give it him) this is the problem, I know there are meds out there to help this condition, along with other treatment he needs, but Lincoln cannot give it to him as they are not equipped for this. Hence why he needs to be transferred to a hospital that does have what he needs (a paediatric pain management team) but no hospital that we have found yet can take him as an inpatient transfer!....my son cannot take anymore, he thinks his life is over, and he don't want to be here anymore.... And all the hospital can come up with is you can take him home, bring a bed downstairs, even though he can't bend his legs, walk, wash, or even get to the toilet, and I terrible pain. It seems as though the hospital have give up on him!

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  • Posted

    Hi i know you live in UK. But the SEATTLE CHILDRENS HOSPITAL in the USA has a unbelievable Pain Rehab Program for children with RSD. Maybe they can give u some referrals. Www.seattlechildrens.org . Good luck.

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  • Posted

    I know it has been awhile since you posted, but your son's case sounds amazingly like a good friend of mine.  When he was just 17 years old he woke up in severe pain, unable to move.  His pain was mainly in his hips and his back. His parents, like you, were mystified. He was lucky that they lived right next to Washington, DC which has the finest doctors and he was easily diagnosed with juvenile rheumatoid arthritis. I presume this has already been ruled out in your son? Sometimes it is worth re-testing these things as a child grows, at one time the RF factor may be low, and then a few years later it comes back positive.  CRPS is such a difficult diagnosis, it is almost a diagosis of exclusion, and it is one with no good treatment.  It is far better to have a presumed "idiopathic form of juvenile rheumatoid arthritis" and try treating him for that with those drugs than to presume he has CRPS which really has no approved good treatment available for pediatric patients.  I would try to get him admitted to a rheumatologist/immunologist.

    Lynn

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  • Posted

    Hi, thanks for taking the time to reply. Test have been carried out to check whether it was an arthritis flare up, but it isn't I'm afraid, if it was, at least it would of been a little easier to treat than this awful condition!

    At present my son is still in hospital, he has been in 8 weeks now, Lincoln have acknowledged that they do not have the experience needed to deal with CRPS or at least not when it's as bad as my sons... Consequently we are waiting for an appointment to come through from Sheffield children's pain clinic... Hopefully they will come up with a plan to get his legs desensitised and get the pain under some kind of control.

    As he has been in hospital for 8 weeks now, his legs muscles are beginning to waste away, which will mean his rehabilitation will be even more difficult!

    Has any one here had any experience with Sheffield children's pain management clinic?

    Regards

    Nick

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    • Posted

      Try the face book group I think it’s crps uk. Something like that. Hope they get him out bed ASAP to get legs moving 
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  • Posted

    Oh it is no bother, as a physician my heart always goes out to little children who get grown up illnesses.  You are quite correct to worry about muscle wasting after 8 weeks of hospitalization, does your current hospital not offer any physical therapy? I know he is in a lot of pain, but if they could dose him with a pain reliever prior to sending him to PT perhaps you could at least manage some range of motion movements of his limbs so they don't become frozen?  This is a huge problem with CRPS, I saw it all the time in my clinic with long term CRPS clients, their affected limbs hurt too much to move and so the limb became frozen with degenerated musculature from disuse.  As I am now affected too, I know the daily struggle, my mirror box is a godsend tricking my brain into thinking I have two good legs.  I can move the CRPS affected leg with so much less pain in that box it is truly amazing. 

    Lynn

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