P76 When symptoms dictate a young persons' life – and the importance of building trust and team work in rehabilitation of patients with complex conditions. (18th November 2019)

• Record Type: Journal Article
• Authors: Gamper, LJ; Simpson, J; Moeda, S; Segal, TY
• Is Part Of: BMJ paediatrics open. Volume 3(2019)Supplement 1
• Page Start: A32
• Page End: A32
• Publication Date: 2019-11-18
• Subjects: Pediatrics -- Periodicals; Children -- Health and hygiene -- Periodicals; 618.920005
• DOI: 10.1136/bmjpo-2019-RCPCH-SAHM.77
• Languages: English
• ISSNs: 2399-9772

Abstract

Abstract : Aim: To illustrate how a multidisciplinary approach to young people with complex conditions can significantly improve function and quality of life. Method: Case report of a young woman, whose adolescence was spent largely bed bound due to several coexisting medical conditions including functional paralysis. Our patient was a generally unwell child. After the HPV vaccination, symptoms of fainting, weakness, pain, rashes and headaches deteriorated, leading to reduced mobility. She never fully recovered. Numerous health professionals were involved in diagnoses and management. The diagnoses established over several years included chronic fatigue syndrome, postural orthostatic tachycardia syndrome, hypermobility-type Ehler-Danlos-syndrome, mast cell disorder and skin reactions to numerous foods and medications. Aged 16, she developed lower limb paralysis after a syncopal episode which left her completely bed bound. Meanwhile functional abdominal symptoms and reduced oral intake led to severe malnutrition (BMI 14 kg/m 2 ) requiring parenteral nutrition. After five years, local referral to safeguarding services for suspected fabricated and induced illness resulted in a traumatic legal dispute, and the medical care was transferred to our team. Treatment objectives were identified: establishing a trusting relationship, introducing hope of recovery, reducing numbers of professionals involved, controlling symptoms, rationalising medications and rehabilitation of mobility and cognition. Pain control was challenging: occipital nerve blocks and experimental therapies, such as low dose naltrexone and ketamine infusions, were used to alleviate pain and facilitate rehabilitation. Mast cell stabilisers and antihistamines were added for symptom control. Symptoms and possible aetiologies were gently challenged whilst acknowledging the traumatic impact of previous disbelieving professionals. After initial reluctance, the role of clinical psychology and psychiatry to support and enable recovery was accepted. Indeed, whilst physically improving, overt depression with psychotic symptoms necessitated intensive involvement. Results: After one year of rehabilitation, she has remarkably improved, progressing from lying to sitting, then standing and walking with help. She is weaning TPN, and most importantly, she is more confident and hopeful for the future. Conclusion: Complex patients should be managed by a multidisciplinary team. Case-management is needed to contain symptoms and avoid overmedication. A trust-based relationship is therapeutic in itself, and symptom control might require experimental therapies.