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30 months follow-up of an early enzyme replacement therapy in a severe Morquio A patient: About one case.
Do Cao, J; Wiedemann, A; Quinaux, T; Battaglia-Hsu, S F; Mainard, L; Froissart, R; Bonnemains, C; Ragot, S; Leheup, B; Journeau, P; Feillet, F.
Afiliación
  • Do Cao J; Reference Center for Inborn Errors of Metabolism, University Children's Hospital, 5 rue du Morvan, 54511 Vandoeuvre-les-Nancy, France.
  • Wiedemann A; Reference Center for Inborn Errors of Metabolism, University Children's Hospital, 5 rue du Morvan, 54511 Vandoeuvre-les-Nancy, France.
  • Quinaux T; Reference Center for Inborn Errors of Metabolism, University Children's Hospital, 5 rue du Morvan, 54511 Vandoeuvre-les-Nancy, France.
  • Battaglia-Hsu SF; Reference Center for Inborn Errors of Metabolism, University Children's Hospital, 5 rue du Morvan, 54511 Vandoeuvre-les-Nancy, France.
  • Mainard L; Radiology Department, University Children's Hospital, Vandoeuvre-les-Nancy, France.
  • Froissart R; Biochemistry and Molecular Biology, University Hospital, Lyon, France.
  • Bonnemains C; Reference Center for Inborn Errors of Metabolism, University Children's Hospital, 5 rue du Morvan, 54511 Vandoeuvre-les-Nancy, France.
  • Ragot S; Rehabilitation center, University Children's Hospital, Vandoeuvre-les-Nancy, France.
  • Leheup B; Genetic Department, University Children's Hospital, Vandoeuvre-les-Nancy, France.
  • Journeau P; Pediatric Orthopedic surgery department, University Children's Hospital, Vandoeuvre-les-Nancy, France.
  • Feillet F; Reference Center for Inborn Errors of Metabolism, University Children's Hospital, 5 rue du Morvan, 54511 Vandoeuvre-les-Nancy, France.
Mol Genet Metab Rep ; 9: 42-45, 2016 Dec.
Article en En | MEDLINE | ID: mdl-27761411
Patients under 5 years were not evaluated in the phase-3 study for enzyme replacement therapy (ERT) in MPS IV A. Here we describe the evolution of a severe Morquio A pediatric patient who was diagnosed at 19 months old and treated by ERT at 21 months old for the next 30 months. Applying the standard ERT protocol on this very young patient appeared to reduce his urinary excretion of glycosaminoglycans (GAGs); the improvements in both the 6 minute-walk test (6MWT) and the stair climb test, however, were no different than those reported in the nature history study. Additionally, this young patient experienced many ERT-associated side effects, and as a result a specific corticosteroid protocol (1 mg/kg of betamethasone the day before and 1 h before the ERT infusion) was given to avoid adverse events. Under these treatments, the height of this patient increased during the first year of the ERT although no more height gain was observed thereafter for 18 months. However, despite of ERT, his bone deformities (including severe pectus carinatum) actually worsened and his medullar cervical spine compression showed no improvement (thus needed decompression surgery). CONCLUSION: early ERT treatment did not improve the bone outcome in this severe MPS IV A patient after the 30 months-long treatment. A longer term follow up is required to further assess the efficacy of ERT on both the motor and the respiratory function of the patient.

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Tipo de estudio: Guideline Idioma: En Revista: Mol Genet Metab Rep Año: 2016 Tipo del documento: Article País de afiliación: Francia Pais de publicación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Tipo de estudio: Guideline Idioma: En Revista: Mol Genet Metab Rep Año: 2016 Tipo del documento: Article País de afiliación: Francia Pais de publicación: Estados Unidos