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Complex Regional Pain Syndrome in Children

Posted , 4 users are following.

kim16153
kim16153

My 13 year old daughter was recently diagnosed with CRPS in her foot following a sprained ankle in football - it took many months to get the diagnosis and we are currently undergoing weekly physio in the hydro-pool at a local hospital. The problem is I don't feel we are getting enough support, have been told very little about the condition (apart from physio telling me not to google it). It is effecting my former sports mad daughter emotionally, and she feels isolated and is struggling at school. Have seen little improvement in her condition and she has been on crutches since January. The paediatric physio just keep saying they will get it sorted and they have dealt with many cases like this before but I feel like I am being fobbed off. Just want advice really - should I go back to GP and say I am not happy or put pressure on hospital myself. Would love to hear from people who have been in similar situation - as I feel this is having effect on the whole family.

0 likes, 11 replies

11 Replies

  • arwen1972
    arwen1972 kim16153

    Posted

    I would put pressure on eveyone involved. You are entitled to fight for the best for your daughter. I wish you well.x
  • english_lady_in
    english_lady_in kim16153

    Posted

    I agree about not looking it up on the internet ,you mainly get the absolute worse scenario.Physio and relaxation and if advised ice are the best for her .I also take Lyrica which is a drug ,but maybe they want to avoid this if possible in a young person.Stress can make the condition worse so be careful not to pass your worries on to her .It is a long haul back and I understand it can be a lifetime for a teenager ! Is there a pain clinic by you who can advise ?
    • helen248
      helen248 english_lady_in

      Posted

      Sorry to contradict but Ice is absolutely the worst thing for CRPS. it causes more pain and can make the condition worse. Warmth not cold. 
    • english_lady_in
      english_lady_in helen248

      Posted

      I am English but I live in France ,my physio hospital is one of the best in France ,top sports men and women go there .It is a 120 bed hospital .Now I am a day patient at a centre recommended by them ,for me ice works ,infact in English the term applied is RICE  ,rest and ice ,again each injury is different but I know when I was there ice was available on every floor .I have a burning sensation in my knee joint which ice helps but again I know it is not for everyone .
    • english_lady_in
      english_lady_in

      Posted

      I do know the phrase use it or loose it but it has to be done gently and stop when there is pain .I am getting there but it has been a long road .I agree with you that I won't be beaten but also know that I can be my own worst enemy .Pain management is a good idea but it depends on where you live ,likewise a good physiotherapist who knows CRPS 
  • helen248
    helen248 kim16153

    Posted

    CRPS is awful for anyone but for a child it must be crushing. I got it after knee surgery that was supposed to make my life so much better. I spent a long time on crutches until i realised that no-one could help me and the only way i was going to improve was to do it myself. The most helpful thing i was told back then was "use it or lose it" and i took that to heart. Now i still have pain and a bunch of other problems but i walk pretty much normally. i went back to riding, running and gardening through sheer bloody mindedness. I forced myself to walk without crutches, to touch the sensitive area and even kneel on the knee again eventually. Your daughter may not get a cure but she can take control and take back her life. She needs to get angry. Do a little more every day. the pain does not have a physical cause now so working through it gently wont do any harm, although it may cause more pain so she needs to go slowly and carefully. Use heat not ice. Keep the limb warm. Elevate to reduce swelling. Ive heard hypnosis can be very helpful but havent tried it myself. 
    • helen248
      helen248

      Posted

      also, request a referral to Dr Goebel at the Walton centre in liverpool. He is by far the best doctor for crps. They do a pain management course and have a host of resources that other clinics dont have. Pointless for me because its firmly entrenched now and i have my own coping methods but for a newly diagnosed person its wonderful
    • kim16153
      kim16153 helen248

      Posted

      Thanks for all the advice - have had discussions today with physio and will be putting her forward for a pain management course - we are in Oxfordshire so it will probably in this area. Also going to ask for pschycological help - has low confidence and morale and I think if she can be stronger in this area she will have the strength to fight it and a determination - at the moment it is like she has given up and is frightened to walk without crutches and generally be active. I am determined to fight this with her and have to remain positive for her sake. Thanks again
  • english_lady_in
    english_lady_in kim16153

    Posted

    I use a TENS machine when needed ,it is a a machine with a small electrical pulse .I do not agree about the pain although it worked for Helen ,I was told CRPS feeds on pain so when it gets too bad I use the TENS .I suffered a tibia plateau fracture almost a year ago .3 fractures which I know take alot of time to  repair .
  • english_lady_in
    english_lady_in kim16153

    Posted

    On the subject of "to Google or not to Google " I went on a few sites to begin with ,I wanted to be informed BUT one forum I found so depressing that I immediately distanced myself from it.
  • chanab
    chanab kim16153

    Posted

    I live in the USA. I have found an awesome sie to get information on. The author of the website suffers with CRPS. I spoke to his mom on the phone, a lovely lady, who told me if I ever needed to talk to call. The site is http://www.rsdhope.org/
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