Discussions By Condition: I cannot get a diagnosis.

Muscle Spasm / Ankle Deformity in Child

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: kay159
  • June 28, 2007
  • 05:32 AM

14 weeks ago my daughter sprained her ankle - although the pain would not subside and she had some stiffness of the joint she was able to walk unassisted for about 4 weeks with very little problem
10 weeks ago we saw a marked increase in pain and were reffered to our local hospital physiotherapy department where she was given a programme of exercises and placed on crutches
At about this time we noticed there was some spasm in the outer part of her leg (just above the ankle) and that her foot was beginning to turn out
The physios noticed that there was becomming less movement in the joint at each visit and she was holding the foot permanantly in 45 degrees of eversion and only weightbearing on the inner portion of her foot.
The foot was put in plaster for a two week period to correct this but the cast had to be removed after a week as the spasm would not subside and her pain levels were increasing - the foot returned to eversion on removal from the cast
The physios then began asking her about her friends, school, problems at home tc as they believed that the problem was psychological and she was basically "making it up". They then prescribed her anti depressants !!!
At this point they said they could no longer help her and referred her to a consultant who ordered an MRI scan (8 weeks waiting time) and sent her back to physio !!!
Things have worsened to the point that she has a constant burning pain, spasm through her leg and foot at approx 10 second intervals, red / blue colour changes to the foot and ankle area, no sensation from just below the knee etc
We saw the consultant ten days ago who diagnosed peroneal muscle spasm but referred us on to his superior for a second opinion
Yesterday we visited this consltant who said the problems are due to her not moving the joint (you don't say) and that he will have to wait another 4 weeks for the results of the MRI scan.
The joint has no movement and is constantly rigid - he did suogest manipulation under anaesthetic and placing in plaster for 4-6 weeks but could not guarantee the position would remain normal once the cast was removed. The problem is that he feels the cast may interfere with the MRI process so he has refrerd us to a specialist childrens pain unit who have a 12 week waiting time for first appointments !!!
He could not offer us a nerve block or baclofen to treat the spasm although I did ask about this.
Has anyone else experienced something similar and how was it treated...?
What would you do in our position to move things along
My daughters pain is increasing daily - school have sent her home permanently as they say she is in too much pain to attend so must work from home - she cannot walk to the car without having to stop and rest - her social life is now non-existant and she is missing doing the normal things a 12 year old should do !!!
Any help or advice would be greatfully received

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6 Replies:

  • Bump !!!! Please help
    kay159 6 Replies Flag this Response
  • Why couldn't she have the nerve block or baclofen? Was this a pediatric orthopedist? How old is your daughter. What country do you live in?
    rad-skw 1,605 Replies Flag this Response
  • We live in the UK and my daughter is 12 - the problem is definitely in the area around the ankle bone where the peroneal tendons and relevant ligaments are located. It would appear that the spam in the peroneal muscle is "pulling" the foot outwards and causing the deformityI have asked the Physios and Consultants about the possibility of something to reduce or stop the spasm or ease the pain but the only thing they can suggest is paracetamol, ibuprofen and amitriptyline (anti-depressent) until they have the MRI scan resultsI know baclofen may help as my mum had a baclofen pump to control spasms caused by MS which was very effective, and a friend of my daughters with a leg injury had a nerve block to ease the pain whilst she awaited test results - surprisingly enough carried out by the same consultant as my daughters !!!We were instructed from very early in this injury to keep the joint mobile, but the main thing I noticed was that as we tried to increase movement in the ankle join, so the spasm began to increase reducing movement further - this is fully documented on the physios treatment sheets - we have been in the downward spiral for 10 weeks now and can see no light at the end of the tunnelMy old consultant told us the problem was definitrly down to the spasm but could not give a definite answer as to what was causing it, so sent us to see his superior. When he examined my daughter he never felt for the spasm, just tried to force her ankle to move than said the lack of sensation, colour changes etc were down to not moving the joint but did not want to test this further I feel we are pinning all of our hopes on the MRI scan at the moment - meanwhile I have a daughter who cries due to the pain and cannot attend school or spend time with friends because of it !!!As we live in the UK treatment is under the NHS - if we want to pay privately for the scans etc it will cost us in excess of £1000 which is money we just do not have at the momentAny advice or help would be most welcome as would anyones experiences of a similar problem
    kay159 6 Replies Flag this Response
  • This indicates a type of Dystonia to me and I would ask to be referred to a neurologist specialising in movement disorders.
    Anonymous 42,789 Replies Flag this Response
  • The longer you wait for a resolution, the more problems that may result. Get as many second opinions as you can.Peds NeurologistPediatric Neurosurgeon consultGet to a large Children's hospital in the UKhttp://www.ich.ucl.ac.uk/http://www.bch.org.uk/Good Luck,Swarthy Mo
    Anonymous 42,789 Replies Flag this Response
  • Thanks for all your help - we finallly have a diagnosis which is RSD / CRPS which is what we didnt want but you dont always get what you want in life!!! :mad::(
    kay159 6 Replies Flag this Response
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