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9 year old with CRPS/Allodynia in knee and now elbow

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embo555
embo555

Please can anyone offer me any positive advice? My 9 year old developed pain in the back of her knee last August which was unexplainable - no specific injury just an onset of pain.  It had to be straightened under anaesthetic and was placed in a cast for a few weeks which is when the real problem set in.  After 2-3 periods in hospital and several investigations/examinations/opinions later, we got referred to a Childrens Hospital who diagnosed CRPS.  My daughter was started on Gabapentin which to be entirely hinest took our daughter from us - she experienced a snowball effect of problems and was completely in a daze for a period of about 3 months of starting, reaching the required dose, 4 weeks on the dose and then another few weeks to "withdraw" from the stuff as you cannot just stop it - a road I never want to visit again.  She has tried hydrotherapy (this seems to make her pain worse), has weekly physio/OT sessions and in March has started seeing a Psychologist every other week.  The pain has spread from a local area on the back of her knee to just above the ankle and half way up the thigh.  She cannot stand to be touched, wear any clothing, cannot bend and therefore cannot sit in any form on chair.  She is in a wheelchair with a leg solit so it is out straight and has several cushions to pad the underneath out.  At Easter, she banged her funny bone on a chest of drawers in her bedroom - xrays and slings followed which ruled out any fracture - was diagnosed as soft tissue injury - thus followed exactly the same thing - she is now unable to straighten her elbow and therefore is unable to use crutches so we are very much on a slippery slope.  We are just tearing our hair out and feel very unsupported.  The Psychologist feels she can sort our daughter out but there must be more out there - please can anyone offer any advice or previous experiences that can give us a little bit of hope and sanity as we are reaching desperation?  Many thanks.

1 like, 3 replies

3 Replies

  • slebby33
    slebby33 embo555

    Posted

    DEAR EMBO555,HI,I HAVE FULL BODY CRPS.I FOUND A VERY SUPPORTIVE,INFORMATIVE GROUP ON FB CALLED CRPS/RSDFIGHTERS.YOU WILL GET ALL THE HELP AND SUPPORT YOU NEED FROM THERE! ALL I CAN SAY IS,COLD/ICE NEAR YOUR DAUGHTERS BAD LEG,ILL BE HER ENEMY,IT MUST BE KEPT WARM! DOES SHE GET PROFUSE SWEATING,HAVE WHITE GROOVES IN HER NAILS? GET SEVERE ITCHING? THIS DISEASE IS SYSTEMIC AND IS NOTHING TO DO WITH HER MIND! A PSYCOLOGIST CAN NLY HELP HER WITH HER FRUSTRATIONS AND PAIN LEVELS BEYOND ANYTHING KNWN TO MANKIND.THIS IS MCGILL PAIN SCALE! SO SORRY YOUR DAUGHTER HAS GOT THIS MONSTER DISEASE.IT CAN ATTACK INTERNAL ORGANS,RESPIRATORY NORMALLY,AS INTERCOSTAL NERVE CAN BE AFFECTED,CAUSING CHEST PAIN,LEADING TO BREATHING SHALLOWLY,CASING BSE F LUNGS TO COLLAPSE.TRY TO ENCOURAGE HER TO TAKE 10 CONCIOUS VERY DEEP BREATHS A FEW TIMES A DAY! NO ROCESSED FOODS!,FOR FUTURE,NO NICOTINE/ALCOHOL TO EXCESS,KEEP AS ACTIVE AS POSSIBLE! AND FOR NOW 500MG VITAMIN C! IF ANY SURGERYS THEN IT'S 1500MG VIT C.THIS PREVENTS A SPREAD OR FLARE UP! THERE IS A GENETIC LINK NOW! SO AS CRPS AFFECTS 1 IN 3,800,AND 2/3 RDS WOMEN,IF ANY WOMEN IN YOUR FAMILY GET EVN A PAPER CUT,OR ANY SOFT TISSUE R NERVE INJURY PLEEEEASE ASK THEM TO TAKE 500MG VIT C FOR AT LEAST A WEEK.BATHING AND SOAKING IN EPSOM SALTS HELPS,BUT PLEEEASE TRY THE CRPS/RSDFIGHTERS.IT IS A SECRET GRUP,JUST ASK TO JOIN.THEY WELCOME WITH OPEN ARMS,OPEN HEARTS AND THE KNOWLEDGE BETWEEN THEM CAN ANSWER ALL YOUR DAILY QUESTIONS.BOY HAVE THEY HELPED ME! ALL MY LOVE TO YUR DAUGHTER,YOURSELF,AND WHOLE FAMILY,LOVE SLEBBY33,XXXXXX
  • beth37114
    beth37114 embo555

    Posted

    Hi Emb555, I'm so sorry to hear you daughter has this condition.  My niece has the same disorder, which she also devolped at 9 years of age.  I don't know which part of the country you are in, but children with Complex Regional Pain syndrome and/or Joint hypermobility syndrome (sometimes CRPS occurs as a comorbidity of JHS) are treated on special inpatient courses at Bath Mineral Clinic and at University College Hospital London. I think the courses are usually aimed at children from around 11 or 12 upwards, but my neice was assessed as mature enough to be accepted and, although her condition has not been cured, she does now experience long periods of remission.  The most important thing you can do for CRPS is to get treatment as early as possible, because it has been shown that the earlier it is started, the more chance there is of full recovery. :-)
    • slebby33
      slebby33 beth37114

      Posted

      DEAR BETH37114,YOU ARE SOOO RIGHT ABOUT GETTING TRETMN EARYAS YOU POBABLY NOW THIS DISEASE IS SYSEMIC,IT IS NOT "IN OUR MINDS" WE CANNOT CONTROL IT.THE MORE INFLAMED THE CENTRAL NERVOUS SYSTEM GETS WITHOUT ANY TREATMENT,THE WRS TE UTCME.MY HEART GES OUT O BTH LITTLE GIRLS,WHOM SHOULD NEVER HAVE THIS N THEIR LIVES LET ALONE AGD 9.LOVE TO ALL,SLEBBY33,XXXXXX
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