Nocturnal enteral nutrition is therapeutic for growth failure in Fanconi-Bickel syndrome.


Journal

Journal of inherited metabolic disease
ISSN: 1573-2665
Titre abrégé: J Inherit Metab Dis
Pays: United States
ID NLM: 7910918

Informations de publication

Date de publication:
05 2020
Historique:
received: 27 09 2019
revised: 04 12 2019
accepted: 06 12 2019
pubmed: 10 12 2019
medline: 24 8 2021
entrez: 10 12 2019
Statut: ppublish

Résumé

Fanconi-Bickel syndrome (FBS) is a rare autosomal recessive disorder characterised by impaired glucose liver homeostasis and proximal renal tubular dysfunction. It is caused by pathogenic variants in SLC2A2 coding for the glucose transporter GLUT2. Main clinical features include hepatomegaly, fasting hypoglycaemia, postprandial hyperglycaemia, Fanconi-type tubulopathy occasionally with rickets, and a severe growth disorder. While treatment for renal tubular dysfunction is well established, data regarding optimal nutritional therapy are scarce. Similarly, detailed clinical evaluation of treated FBS patients is lacking. These unmet needs were an incentive to conduct the present pilot study. We present clinical findings, laboratory parameters and molecular genetic data on 11 FBS patients with emphasis on clinical outcome under various nutritional interventions. At diagnosis, the patients' phenotypic severity could be classified into two categories: a first group with severe growth failure and rickets, and a second group with milder signs and symptoms. Three patients were diagnosed early and treated because of family history. All patients exhibited massive glucosuria at diagnosis and some in both groups had fasting hypoglycaemic episodes. Growth retardation improved drastically in all five patients treated by intensive nutritional intervention (nocturnal enteral nutrition) and uncooked cornstarch with final growth parameters in the normal range. The four severely affected patients who were treated with uncooked cornstarch alone did not catch up growth. All patients received electrolytes and l-carnitine supplementation to compensate for the tubulopathy. This is one of the largest series of FBS on therapeutic management with evidence that nocturnal enteral nutrition rescues growth failure.

Identifiants

pubmed: 31816104
doi: 10.1002/jimd.12203
doi:

Substances chimiques

Glucose Transporter Type 2 0
SLC2A2 protein, human 0

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

540-548

Informations de copyright

© 2019 SSIEM.

Références

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Auteurs

Alessandra Pennisi (A)

Reference Centre for Inborn Errors of Metabolism, Robert-Debré University Hospital, Paris, France.
Division of Metabolic Diseases, Department of Paediatric Specialties, Bambino Gesù Children's Hospital, Rome, Italy.
Department of Pediatrics, University La Sapienza of Rome, Rome, Italy.

Bruno Maranda (B)

Reference Centre for Inborn Errors of Metabolism, Robert-Debré University Hospital, Paris, France.
Department of Medical Genetics, Université de Sherbrooke, Sherbrooke, Québec, Canada.

Jean-François Benoist (JF)

Reference Centre for Inborn Errors of Metabolism, Robert-Debré University Hospital, Paris, France.

Véronique Baudouin (V)

Department of Paediatric Nephrology, Robert-Debré University Hospital, Paris, France.

Odile Rigal (O)

Reference Centre for Inborn Errors of Metabolism, Robert-Debré University Hospital, Paris, France.

Samia Pichard (S)

Reference Centre for Inborn Errors of Metabolism, Robert-Debré University Hospital, Paris, France.

René Santer (R)

Department of Paediatrics, University Medical Centre Eppendorf, Hamburg, Germany.

Francesca Romana Lepri (F)

Laboratory of Medical Genetics, Bambino Gesù Children's Hospital IRCCS, Rome, Italy.

Antonio Novelli (A)

Laboratory of Medical Genetics, Bambino Gesù Children's Hospital IRCCS, Rome, Italy.

Hélène Ogier de Baulny (H)

Reference Centre for Inborn Errors of Metabolism, Robert-Debré University Hospital, Paris, France.

Carlo Dionisi-Vici (C)

Division of Metabolic Diseases, Department of Paediatric Specialties, Bambino Gesù Children's Hospital, Rome, Italy.

Manuel Schiff (M)

Reference Centre for Inborn Errors of Metabolism, Robert-Debré University Hospital, Paris, France.
UMR1141, PROTECT, INSERM, Paris University, Paris, France.
Reference Centre for Inborn Errors of Metabolism, Necker University Hospital, Paris, France.

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