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