Growth problems

Description

The Pediatric Endocrinology Clinic provides diagnosis and follow-up for patients aged 0 to 18 who have an endocrine problem, i.e. one involving hormones (growth, puberty, pituitary gland, thyroid, adrenal glands, sexual development and bone metabolism). Some rare endocrine diseases require follow-up by several specialists. The doctor–nurse team aims to empower patients to become experts in their disease by informing them and listening to them as carefully as possible. Communication between the various specialists takes place during multidisciplinary meetings at HUDERF, in collaboration with Belgian teams (Belgian Study Group for Pediatric Endocrinology). At European level, the centre is integrated into and actively participates in the ENDO-ERN network established by the European Commission. The idea is as follows: the European Union is a vast reservoir of knowledge and expertise, and it is the ideas that travel, for the benefit of patients with rare diseases.

When is a growth assessment necessary?

Several clinical situations may lead to a growth assessment:

When the child’s height falls outside the curves for the general population (below -2 standard deviations (SDs) or above +2 standard deviations compared with the mean for the child’s age and sex)
When the child is growing at a height substantially different from their genetic target height, calculated on the basis of their parents’ heights
When their growth rate is low for their age.

During the first appointment, a detailed medical history is taken and a thorough clinical examination is performed. The family is also asked about their experience of the possible short stature. Following this consultation, regular growth monitoring may initially be recommended, or an aetiological assessment may be requested. This initially includes a blood test and a bone age assessment.

Care management

Depending on the clinical and biological findings, as well as the dynamic progression of the child’s growth and their experience, the initial assessment may be supplemented by more specific examinations. Confirmation of a diagnosis will not systematically lead to the initiation of treatment with biosynthetic growth hormone. Indeed, this treatment is indicated only in certain specific clinical situations (partial or complete growth hormone deficiency, rare genetic syndromes, or the absence of spontaneous catch-up growth in a child born small for gestational age). When treatment is indicated, it is initiated in collaboration with the family. The family is supported by the nursing and medical team throughout the process. The child’s experience of the treatment and its impact on daily life are regularly discussed during care; this is an essential aspect of the doctor–patient partnership.

Advice

Treatment with growth hormone requires regular follow-up and the commitment of everyone involved (parents, children, doctors, nurses and psychologist) to ensure an optimal outcome under the best possible conditions. Monitoring should continue at least until the end of growth. The appearance of new complaints or an interruption of treatment must be reported to the doctor so that care can be adapted if necessary.

Transition to adulthood

The transition to adult endocrinology follow-up is also an important step to be successfully completed. The endocrinology teams at HUDERF and Erasme Hospital have been working together towards this goal for several years.

Focus

Patients are treated by a certified paediatric endocrinologist. Biochemical assessment is performed in a specialised laboratory equipped with an appropriate LC/MS system. Genetic testing and genetic counselling are carried out in a specialised laboratory. A 24-hour on-call service is provided. A transition plan for adulthood has been in place for many years.

Useful documents

trajet_de_soins_cah_hub.pdf

Associated specialists

Prof. Cécile Brachet
Dr Emese Boros
Dr Fiorenza Ulgiati
Dr Alfredo Vicinanza
Dr Sylvie Tenoutasse
Prof. Claudine Heinrichs
Prof. Silvia Ciancia
Prof. Natacha Driessens