A Family’s Pain Experience Nature? Nurture? Solicitous torture?

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

2. Confidentiality 1

3. ‘Model Discussion’ available 2

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

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 5

7. 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 6

8. 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. The opening minute

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

11. Peter Anne 20yo Shane Kylie ‘Tweens’ Topaz 1½yo Teora 9yo

12. Nan – Anne • 1994 #5th 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. 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. 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. 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. Teora’s Foot (not)

18. 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

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21. 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. Teora’s Thoughts and Emotions

24. Pause

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

26. Adult v Childhood CRPS Berde2005 25

27. Genetics? 26

28. 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 27

29. Family System? 28

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 29

31. 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 30

32. 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 31

33. Child Protection 32

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

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

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

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 37

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 38

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 39

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 40

42. 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 41

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

44. Pop-up Teams 43

45. 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 44

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

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