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A Family’s Pain Experience Nature? Nurture? Solicitous torture? Prepared by: Susie Lord Pain Specialist 23/2/2011.

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Presentation on theme: "A Family’s Pain Experience Nature? Nurture? Solicitous torture? Prepared by: Susie Lord Pain Specialist 23/2/2011."— Presentation transcript:

1 A Family’s Pain Experience Nature? Nurture? Solicitous torture? Prepared by: Susie Lord Pain Specialist 23/2/2011

2 1 Confidentiality

3 2 ‘Model Discussion’ available

4 3  Orthopaedic referral  Thankyou for seeing this 9 yo girl for assessment and management of suspected RSD left leg following fractured cuneiform. Her GP is aware.

5 4  ED: She fell off fence 9 wks ago  # cuneiform  twist and fell whilst in plaster  more pain and swelling  split  reapplied plaster

6 5  Fracture Clinic: Pain, purple colour, swelling and limited movement persisted after removal of plaster  non-wt-bearing using crutches, paracetamol or ibuprofen, awaiting physio

7 6  ED: She fell off fence 9 wks ago  # cuneiform  twist and fell whilst in plaster  more pain and swelling  split  reapplied plaster  Fracture Clinic: Pain, purple colour, swelling and limited movement persisted after removal of plaster  non-wt-bearing using crutches, paracetamol or ibuprofen, awaiting physio  Registrar: She always presents with Nan and there is a family history of ‘RSD’ in 3 generations

8 7 An aside on ‘RSD’ Short for Reflex Sympathetic Dystrophy Now called Complex Regional Pain Syndrome (CRPS) A clinical pain syndrome  Following (usually) an injury  Spontaneous pain, hyperalgesia*, allodynia* in a region  Accompanied by vascular, swelling, sweating and motor changes  Other causes excluded

9 8 The opening minute

10 9 Pause  What feelings does this child/family create in you?  How can we manage ourselves?  How can we manage this child/her family?

11 10 ShaneKylie Teora 9yo Topaz 1½yo PeterAnne 20yo ‘Tweens’

12 11 Nan – Anne  1994 #5 th metatarsal  CRPS diagnosed  CRPS ‘went through all 4 limbs / whole body’  GP and pain service  ‘went through all the drugs and side-effects’  Guanethidine blocks, physio, hydro,  Wheel-chair for 10 yrs, considered amputation  Pain program, ‘threw away the drugs’ got back to walking, still ‘suffers terribly’ but ‘gets on with it’  Migraine, wrestless legs, burning soles, heat/cold intolerance, hypertension

13 12 Mother – Kylie  1995 MVA #femur, #ribs, back pain and PTSD  2000 post-natal depression  2002 #wrist  CRPS diagnosed  GP, hand surgeon, 2 pain services  Multiple interventions/meds, considered amputation  Opioid dependent, awaiting wrist fusion surgery  Migraine, wrestless legs, heat/cold intolerance, hypertension, depression, ?other mental health, ?D&A problems

14 13 Child – Teora  Born 36/40 gestation, CPAP, reflux  Mild asthma  3 yrs ago # forearm  2yrs ago scooter fall (no helmet) CHI / L knee pain  persistent somatic knee pain, normal imaging  9wks ago jump from fence # L foot bone  persistent ankle and foot pain  5wks ago traction injury left wrist no # evident  persistent wrist and hand pain

15 14 Child – Teora  Born 36/40 gestation, CPAP, reflux  Mild asthma  3 yrs ago # forearm  2yrs ago scooter fall (no helmet) CHI / L knee pain  persistent somatic knee pain, normal imaging  9wks ago jump from fence # L foot bone  persistent ankle and foot pain  5wks ago traction injury left wrist no # evident  persistent wrist and hand pain

16 Teora’s Pain  Lateral heel/hindfoot  Horrible, aching  Range 8-10/10 (Faces-R)  ↑ Touch, weight, movt, ‘fights’  ↓ Nothing (simple Rx, codeine)

17 16 Teora’s Foot (not)

18 17 Teora’s Foot (not)  Tubigrip  Partial wt-bearing on 1 crutch  Redder, mottled  Mild swelling  Dry skin  Cool to ankle  Reduced touch, pain, cold over lateral hindfoot, malleolus, heel  Allodynia and hyperalgesia over remainder to distal 1/3 calf  Flicker of ankle and toe movt

19 18

20 19

21 20 Teora’s Life  Sleep disturbed, sleeping with Nan  Unable to wear sock or shoe  Mobilising on one Canadian crutch  Begging for 2 crutches (‘you had a wheelchair!’)  Attending school but feeling doubted / isolated  Missing leisure and social interactions  Angry, distressed  Wanting to cut leg off

22 Teora’s Thoughts and Emotions

23

24 23 Pause

25 24 Another aside on CRPS 1 symptom in all 4 categories + 1 sign in 2 categories = CRPS

26 25 Adult v Childhood CRPS Berde 2005

27 26 Genetics?

28 27 What we know…  On a population level, genes don’t count for much CRPS  CRPS can occur in families, but mode of inheritance unclear  Those with familial CRPS are more likely to: –Develop it younger –Have multiple affected extremities –Have associated dystonia  Genes that show no association – SCN9A, NEP, DYT  HLA complex implicated – HLA-B26, HLA-DQ8  CRPS-1 in childhood associated with maternally inherited mitochondrial disease

29 28 Family System?

30 29 Teora’s Progress  Information for child and family  Paediatric physio + CAMHS + trial of antineuropathic Rx  Over next 2-3 months her pain improves  Teora returned to school, handball

31 30 Teora’s Progress  Information for child and family  Paediatric physio + CAMHS + trial of antineuropathic Rx  Over next 2-3 months her pain improves  Teora returned to school, handball BUT  Growing number of somatic complaints  Starts going to sick-bay daily  Defiance and behavioural challenges  Anxiety and nightmares  Additional injuries

32 31 Teora’s Injuries  Fall on jetty  L wrist becomes worst pain (not CRPS)  Increasing worries about own L wrist pain and her Mother whose left wrist has gone back into plaster  Function stable but somatic complaints and distress increasing  Not able to engage in outpatient care plan *  Semi-urgent admission planned  In meantime...fall on uncle’s boat  undisplaced # distal radius  brace

33 32 Child Protection

34 33

35 34 Teora’s Admission  Who want’s to look after her?

36 35 Teora’s Admission  Who want’s to look after her?  Which adult will stay with her?

37 36 Teora’s Admission  Who want’s to look after her?  Which adult will stay with her?  Which adult will make medical decisions?

38 37 Teora’s Admission  Who want’s to look after her?  Which adult will stay with her?  Which adult will make medical decisions?  Kylie’s admission

39 38 Teora’s Admission  Who want’s to look after her?  Which adult will stay with her?  Which adult will make medical decisions?  Kylie’s admission  Observations of Anne’s attitudes and behaviours

40 39 Teora’s Admission  Who want’s to look after her?  Which adult will stay with her?  Which adult will make medical decisions?  Kylie’s admission  Observations of Anne’s attitudes and behaviours  Somatisation disorder and depression

41 40 Teora’s Admission  Who want’s to look after her?  Which adult will stay with her?  Which adult will make medical decisions?  Kylie’s admission  Observations of Anne’s attitudes and behaviours  Somatisation disorder and depression  Unhealthy aspects of admission

42 41 Teora’s Admission  Who want’s to look after her?  Which adult will stay with her?  Which adult will make medical decisions?  Kylie’s admission  Observations of Anne’s attitudes and behaviours  Somatisation disorder and depression  Unhealthy aspects of admission  Response to antidepressants

43 42 Discharge Plan  Identified adult responsible  Communication with GP, school, CS  Appointments with CAMHS  FU with GP, paed physio and me

44 43 Pop-up Teams

45 44 Post Discharge Themes  Disparity between child’s complaints and Nan’s  Disparity between complaints and function  Tension between medical needs of family members  Mother’s opioid problems and impact on household  Vulnerability of both children

46 45 Current Needs  Need for stable residence / access  Need for routine  Need for peer connection  Space for wellness within this family system

47 46 hips@hnehealth.nsw.gov.au © Hunter New England Area Health Service 2005. All rights reserved.


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