Hyperinsulinaemic hypoglycaemia (HI) is associated with genetic syndromes and a rare feature in aneuploidies (45,XO; mosaic Trisomy 13). The Exeter Genomics Laboratory reported higher-than-expected referrals of individuals with HI and Trisomy 21. (1) The clinical phenotype (n=11) was variable with high burden of non-genetic HI risk factors. There are single reports of Trisomy 21 with insulinoma or Beckwith-Wiedemann syndrome (BWS).
Aim
To describe a case of persistent, diazoxide-unresponsive HI in a child with Trisomy 21.
Method
Single retrospective case report.
Results
A female with antenatal diagnosis of Trisomy 21 was delivered at 34+4 weeks gestation due to intrauterine growth retardation. She had postnatal CMV infection, congenital hypothyroidism and a perimembranous ventriculoseptal defect (repaired at 3 months). She was dependent on gastrostomy feeds (continuous/bolus) until surgical repair of a long-gap oesphageal atresia (gastric tube with pyloroplasty) at 6 months. After a complicated peri-operative course, she progressed very slowly from gastrostomy/jejunostomy to oral feeds.
The child presented with HI at 17 months: plasma glucose 1.9mmol/L, insulin 11mU/L, low beta-hydroxy butyrate and elevated glucose infusion rate. She was unresponsive to oral Diazoxide (15mg/kg/day) and immediate-release subcutaneous Octreotide (25mcg/kg/day).
Targeted next-generation sequencing of 20 HI genes did not identify any pathogenic variants. BWS genetics was negative. 18F-DOPA PET/CT scan revealed diffuse uptake.
Safe fasting tolerance after weaning of continuous intravenous dextrose and gastrostomy feeds has been achieved with escalating monthly Lanreotide (60mg-2 months; 90mg–3 months).
Discussion
This adds to limited reports of the co-existence of HI with Trisomy 21. Other cases were perinatal, transient and not requiring diazoxide or diazoxide-responsive. Early dependence on gastrostomy and continuous/frequent feeds may have masked HI. Post-operative reduced stomach capacity and rapid gastric emptying may have contributed intermittently to ‘dumping’. Any future pancreatectomy will be complicated by past gastroesophageal surgery.