Oscar's Infected Arm Photo

Oscar’s CRPS Journey

Do you know anyone who has learnt to walk three times? I do, my incredible son Oscar!

Oscar is a 12 year old boy with CRPS in both his feet and his right knee and wide spread Hypermobility. He has a very complicated medical history having had Kawasaki disease and low IgG ( immunoglobulins, so prone to infection) and has spent a lot of his young life in a hospital environment.

On top of this he has an 8 year history of all over body pain and extreme fatigue, however when he was 6 years old he had increasing stabbing pain in his right knee that prevented him from bending or straightening his knee properly, it was also often red and swollen. He was referred to various specialists and had an MRI scan and various tests over the following 8 months and it was concluded that there wasn’t anything medically wrong and it was deemed that he had phycological issues and was referred to a Phycologist. I knew that this wasn’t the case, that it wasn’t possible for a boy of 6 to pretend that they were in pain and not use their knee properly for all this time.

Over the next 3 years we struggled on, he missed a lot of school through pain and fatigue and without a diagnosis of any sort the school were not supportive and various other bodies got involved including social services and education welfare officers. This then lead on to disbelief all around us, Doctors, teachers and now worse of all parents and children at his school too. He became unable to play sport without being in agony afterwards, climbing stairs became comparable to climbing a mountain, yet it was still presumed that it was in his head, when eventually a diagnosis of ‘amplified pain’ was given I felt just to shut my husband and I up.

We plodded on, feeling at a loss as to how we could help our child. Then aged 9 in the later part of 2012 he kept complaining of stabbing and burning pain In his feet, when I examined them they were red hot and he flinched at my touch stating it made the pain worse, we were dismissed by the GP. Then within a week he started walking on tiptoe and complaining that his feet at times were so cold he felt that they had been put in a freezer and the stabbing pain was keeping him awake a night. The following morning he couldn’t get out of bed as he was unable to weight bear. We took him to A&E, they said they couldn’t help as they felt his problem was a complexed issue rather than acute and suggested we speak to his consultant. I phoned the hospital that treated him previously, but he had technically been discharged therefore we had to go back to the GP. He sent us for x-Rays which of course we’re all clear.

By now Christmas was fast approaching and Oscar’s lack of mobility and inability to tolerate shoes and socks lead us to hire a wheelchair from the Red Cross. Everything was alarming us, not to mention the fact that his school said he could no longer attend in his wheelchair, his world was falling apart around us and we felt powerless to help.

I went to see another GP desperate and in tears, thankfully he arranged for us to be seen in the rapid access clinic later that week. A consultant their diagnosed ‘suspected CRPS’ and put him on Neurotin, however as she didn’t know Oscar and because of his complicated medical history she wanted him to be seen by his old consultant for clarification. The said consultant was away for Christmas so again we were left in limbo. My husband decided to do some research and that we had to push for oscar to get the treatment he needed. He read about Great Ormond Street Hospital and their 2 week rehabilitation program, he spoke to some very helpful people in the hospital who explained we needed a referral to get seen by their pain management team. Once his consultant returned from his holiday and saw the state of Oscar, he referred us there and then to GOSH, he was gobsmacked by his deterioration.

By now Oscars feet were in a terrible state, they would be ice cold and purple or red hot and swollen sometimes one foot was hot and the other ice cold. He had not walked for over a month now and his skin was starting to break down where he became so immobile.

(see pictures below)

We got an appointment through very quickly and were seen in January 2013. They gave a definitive diagnosis of bilateral CRPS in his feet and right knee, to think our poor boy had had CRPS in his knee for over three years yet he wasn’t believed or diagnosed and didn’t have the help he deserved and so greatly needed still troubles me deeply to this day.

He was promptly offered a 2 week rehab program on the 25th of February 2013.

My next instalment will be all about Oscars first recovery from CRPS……

Natasha Knight

CRPS affected limbs - foot

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oscar-foot1

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This Post Has 18 Comments

  1. Anonymous

    How did Oscars treatment at GOSH go??

    1. Natasha knight

      Hi… Oscar has now had two inpatient stays at GOSH. Although the treatment was tough on us both they did initially get good results and got him walking again. However both times the CRPS did come back and the relapes were tough. I would recommend the program and push for a referral to the pain department from you GP. Now Oscar is 12 he can be treated at the adolescent hospital in Bath. We have been referred as Oscars local consultant said he needs another 3 week rehab program because as as well as he feet still flaring he is experiencing new debilitating pain in his lower back.

  2. Kirsten

    Would love to hear more, we are waiting GOsH clinic appointment and hoping to get on the in patient prog for 11yr old with CRPS in foot.

    1. Natasha

      Have you had your appointment yet? If so I hope you got on the rehab program and got the results you needed. I am not sure where you are in the UK but there is a great program in Bath but you have to be over 12. We are waiting for Oscars initial appointment there in view of another 3 week rehab program. Good luck with everything

      1. kirsten

        Natasha – thanks for the reply – we are still waiting and after being told an 8 week wait at end of Nov, we are now being told 8months – YES 8 MONTHS!!!I am fighting this!!! Will look into Bath, daughter is 12 in a few months (before we can get a place at GOSH) so this may be another avenue to push… hope things go well there for Oscar – and you – its rubbish seeing them in so much pain!! We have found a TENS machine helps provide some temporary relief…have you tried that ?

      2. Cerys

        Hi my daughter is 14, CRPS has affected both feet, back and left arm. We are currently in hospital waiting to see if we get the placement at bath. I hope and pray that she gets in hand has good results to help her move on from this .

  3. Clare

    My son was diagnosed with allodynia in his left foot 2 weeks ago. He has been on crutches for the last 5 weeks, unable to tolerate the slightest touch, wear a shoe or put his foot down. Last week he missed a week of school because of the pain. He’s seen the orthopaedic surgeon, physio and gp. Physio is saying she can’t work on the foot as it will be too painful. Gp has given gabapentin but thinks part of the pain is psychological as well as physical. My son is an anxious child anyway, and this has not helped. We’re hoping he’ll get referred to GOSH but understand he needs to have had symptoms for at least 3 months and tests need to be done in advance. Please could people tell me what tests were carried out before their child was referred? Not aware of place in Bath but we are in Herts so GOSH would be easier to get to. It would be great to meet up with others who are in the same situation as this condition in children seems to be quite rare and it is difficult for others to understand quite what he is going through. Also, our son is beginning to feel quite isolated. It is difficult to come up with activities that he can participate in. He was always so sorry before this. What activities do others do?

    1. CRPS - admin

      Hi Claire, sorry your son is having to go through this. The best place to get support is probably on our facebook group https://www.facebook.com/groups/CRPSUKlivingwithpain/ Bath Centre for Pain Services are a specialist unit where they treat children & adolescents (and adults) with CRPS or chronic pain.

      1. Clare

        Thanks. I have joined your Facebook page this evening and already feel like we’re not the only ones dealing with this. Thank you.

  4. Kitsten

    Hi Claire, we have just completed week 1 of the 3 week GOSH programme after a 4m wait from referral and we were already under gosh for pain management …and to be honest it is all about trust and confidence. Others we have met this week have been 6-12m in chronic pain… My daughter has let the physios touch and manipulate her foot and the prog works mainly on strengthening leg and core muscles for 2 sessions per day (a bit Pilates exercises) in a group environment. As well as this the physios manipulate the affected limbs and get them to walk properly (once muscles are strong) and reinforce it is not causing any damage and it is not hurting (easier said than done). It’s slow and steady but builds confidence. She won’t let me anywhere near her foot but the physios have been moving it and getting her to stand properly….so that’s where the psychology comes in… keep pestering GOSH as much as you can and keep him mobile – we did a lot of swimming which did not reduce pain but the exercise made her feel better and she was able to do this – it was a bit of an effort to persuade her to go but worth it…we also bought a cheap TENS machine which worked wonders…basic one which meant she was left to work it out herself and in control..she seemed to cope better when it stopped becoming a daily obsession (I stopped asking how she was and we stopped the home exercise programme of 3x a day mirror therapy and other nonsense exercises)..do no sit around doing nothing!! Daughters school let her sit in student services for certain lessons which gave her a rest but enabled her to be at school all day and participate in break and lunch time. I went against Dr orders and let her use crutches for school… But they were not used at home or weekends, but meant she was in school every day…good luck and keep chasing every option in the NHS!!! This week we are making progress so there is hope ….

    1. Clare

      Thanks for your message. I will be speaking with gp this week and will be pushing for referrals. What tests were carried out on your daughter before referral to GOSH? I want to make sure they’re all done asap and we can get moving with it. How does your daughter move around at weekends if she doesn’t use crutches?

      1. Kitsten

        We have had 3-4 years of ongoing issues, she tore ligaments in her ankle and it’s not been right since so we have been through 2 orthopaedic consultants, in plaster, in air boot, X-ray (numerous times), MRI scan,NMR scan, diagnosed with growing pains , fallen arches, plantar fasciitis, sessamoiditis, (which I still think may be true), but she has persisted with sport and the final straw was a weekend of netball in sept 15 that resulted in her not being able to touch her foot – allodynia…it’s almost like the repeated injury has resulted in her nervous system saying ‘I’ve had enough’ and stopping the pin signal being blocked. We were referred last year (Easter time) by orthopaedic consultant to GOSH pain management and have being doing home exercises and Physio for near on 3 years…we saw them in Aug last year and they recommended local Physio and pain management! , at this stage she could still run/walk and was doing sport but working through the pain in the ball of her foot (hence my sessamoiditis thought)..coming home and ice/elevation….so we were already in the GOSH pain management system.. following the Sept 15 injury we saw local physios (private while waiting for NHS) and NHS who both diagnosed crps and said the GOSH rehab course was the way forward. We were due back at the pain management clinic at GOSH in Dec and I pushed like mad to get this appt. brought forwards…managed an end Nov appt. and then continued to push push push to get on the inpatient course. Happy to chat as we were in the position you are in back in October and it was awful…crutches for school were because school is really spread out and she could not get around in between lessons . At home we can pace things better – more rest and slower pace hence the “crutches ban”….GOSH has always said no crutches / airboot but to us it’s a balance of daily life (school and friends) and following recommendations while waiting for treatment… Happy to chat if you want to send email /contact details as I was at my wits end in November…as I am sure you are now!! Good luck with the GP and keep pestering/pushing….we have been to A&E lots of times simple to get pushed back into the system…it is a game!!

        1. Clare

          When she doesn’t use crutches is she able to walk? At the moment, my son cannot touch anything with his foot including the ground so it would be a bit tricky. He was originally diagnosed with sesamoiditis so don’t know of that is what’s triggered his allodynia. He’s having an MRI at the end of this month but I get the impression they don’t expect it to show anything. Wondering what other tests they might do and who does it. Assume we will get moved from orthopaedic as would imagine allodynia is not his field so who will manage his care. This is what I’m finding hard as not under GOSH or any pain management at the moment.

          1. Kitsten

            Ask your orthopaedic consultant to refer you to the pain clinic at GOSH or even your GP – orthopaedic referral was our route, but not had any tests other than the scans I mentioned. Daughters pain is only in her big toe joint so she has perfected the art of hobbling on the outside of her foot….not ideal as puts knee/hip out of allignment and she has lots of hard skin on the outside of her foot and stiff muscles up her legs- so we massage her leg and arch of her foot (where we can touch) at least once a day. If she is really distracted/having fun she can last a lot longer wonky walking than if she is not distracted. Maybe phone orthopaedic and ask for referral, or you GP? Good luck , it is awful seeing them in so much pain and feeling there is nothing to help.

          2. Clare

            Thanks. Have raised referral to GOSH with gp. Will talk with him about it again this week. Seeing orthopaedic surgeon on 7th April after mri so will also talk to him about it if get no-where with gp. Think will need it.

  5. Natasha

    Hello Clare and Kirsten,

    It’s Natasha the Mum of Oscar who wrote the original article! Firstly Clare I agree with everything Kirsten has suggested regarding allodynia. As hard and painful as it is you have to keep the sense of touch up! Initially I was told to do feather therapy and build up to rubbing sand paper on his feet! ( near torture ) this of course was as good as impossible as poor Oscar has it in both feet from mid shin down to the whole of his feet! I got some alternative great advice which I recommend to everyone! Rather then cause unessesery pain I was told to inflict only useful pain!! So shower, then dry with a soft towel then a firmer one. Then put on talc ( cream if tolerated not the case for Oscar ) next thing is different socks…. So fluffy comfy ones, tight thin ones, lower trainer socks!! Then put on different shoes from crocs to tight fitting trainers. Same goes with trousers, put on different ones from soft track suits to jeans so you get used to pulling them over the allodynia effected areas ! Oscar couldn’t wear socks or shoes for over a year, once he implemented the above he now makes sure he wears socks and shoes every day. The desensitisation works better if the suffer does all the above rather then the carer. He still has severe CRPS and allodynia but by doing this the colour changes and swelling are reduced and the extreme dry skin has dissipated! More importantly he can go out now without his feet being more vulnerable and feeling different!

    Unfortunately his appointment at Bath has been cancelled, his initial assessment is now next week!

    CRPS is an awful illness and I can only speak of my experience! My poor son was affected very suddenly by CRPS when he was 9 years old he is now nearly 13! Life has been a roller coaster however most of last four years he has been restricted to a wheelchair and suffered extreme pain! I am hoping for a cure and I wish they offered more treatment for children other then physio and physiological help which I know is vitally important however I feel there is a lot more that can be offered to this poor children that suffer beyond our comprehension EVERY single day!!! I wish all you parents out there all the luck in the world!! 🍀

    1. CRPS - admin

      Rebecca here, I got CRPS as a child (I’m now 22). I’d second what Natasha’s said about inflicting only useful pain – with the addition of inflicting pain which is allows fun/enjoyment. The physio I did most regularly was physio that had some element of enjoyment in it – I started as upper limb so things like playdough, painting and baking were really useful activities.

      1. Clare

        Thanks. Clare here. George has been on gabapentin now for about 3-4 weeks and this has definitely helped helped. He is much calmer and is happier putting on his fluffy sock! His physio talked about desensitisation and had said it is better for him to do it as he us then in control. Today he had a physio appt and managed to put his heel down on his left foot which is the first time he’s managed it in 8 weeks so great progress. His physiotherapist is brilliant and George gets on well with her which is really important. The pain is mainly in his big toe and ball of foot so haven’t attempted putting that down yet! He has been referred to GOSH so still waiting to hear from them. It is definitely a rollercoaster. On a good day I feel much more relaxed but then on tenterhooks waiting for the next episode of awful pain which is really hard.

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