Transcript Document

A Family’s Pain Experience

Nature? Nurture?

Solicitous torture?

Prepared by: Susie Lord Pain Specialist 23/2/2011

Confidentiality

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‘Model Discussion’ available

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 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.

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

 ED: She fell off fence 9 wks ago   twist and fell whilst in plaster  # cuneiform 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

 ED: She fell off fence 9 wks ago   twist and fell whilst in plaster  # cuneiform 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

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 7

The opening minute

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Pause

 What feelings does this child/family create in you?

 How can we manage ourselves?

 How can we manage this child/her family?

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Peter Anne ‘Tweens’ Shane Kylie Topaz 1 ½yo Teora 9yo 20yo 10

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 11

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 12

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 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 14

Teora’s Pain

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

Teora’s Foot

(not) 16

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 17

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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 20

Teora’s Thoughts and Emotions

Teora’s Thoughts and Emotions

Pause

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Another aside on CRPS

1 symptom in all 4 categories + 1 sign in 2 categories = CRPS 24

Adult v Childhood CRPS

Berde 2005 25

Genetics?

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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

Family System?

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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

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

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  distal radius  brace undisplaced # 31

Child Protection

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Teora’s Admission

 Who want’s to look after her?

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Teora’s Admission

  Who want’s to look after her?

Which adult will stay with her?

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Teora’s Admission

   Who want’s to look after her?

Which adult will stay with her?

Which adult will make medical decisions?

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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

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

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

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

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

Discharge Plan

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

Pop-up Teams

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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

Current Needs

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

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© Hunter New England Area Health Service 2005. All rights reserved

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