Intellectual disability

The multidisciplinary team responsible for monitoring patients with moderate to profound intellectual disability consists of:

• Coordinating physician and paediatric neurologist: Dr Anne Monier anne [dot] monier [at] hubruxelles [dot] be (anne[dot]monier[at]hubruxelles[dot]be)
• Geneticist: Dr Catheline Vilain
• Paediatricians: Dr Pascale Perlot, Dr Surgun Ebru, Dr Céline Morelli
• Ophthalmologist: Dr Lavinia Postolache
• ENT specialist: Dr Oren Cavel
• Dentist: Mr Amir Shayegan
• Cardiologist (as required): Dr Hugues Dessy
• Endocrinologist (as required): Dr Cécile Brachet
• Orthopaedic surgeon (as required): Dr Jean-Paul Kaleeta
• Psychologists: Ms Sophie Carlier (genetics, behavioural disorders), Ms Christelle Deterville (psychomotor assessment), Ms Clara De Rauw (IQ assessment)
• Physiotherapist: Ms Patricia Clément (psychomotor assessment)
• Speech therapist: Ms Lorraine Calimez
• Neuropsychologists: Ms Ann Van der Heyden, Mr Simon Baijot
• Secretary: Ms Daniela Wayllace SecMed [dot] NeuroPed [dot] huderf [at] hubruxelles [dot] be (SecMed[dot]NeuroPed[dot]huderf[at]hubruxelles[dot]be)
• Social worker: Ms Géraldine Verdonck

When a child is suspected of having global developmental delay (<5 years) or moderate to severe intellectual disability (>5 years), several steps are taken to confirm the diagnosis and its aetiology:

• Paediatric neurology consultation: complete clinical examination and additional investigations depending on the clinical suspicion (laboratory and metabolic assessment, brain MRI)
• Genetics consultation (complete clinical examination to look for dysmorphic features and other abnormalities, family history) and prescription of genetic blood tests. Receiving the results of these analyses may take several months. The results are communicated to the parents during a joint consultation with the geneticist and psychologist
• Neurosensory assessment: hearing and vision
• Multidisciplinary assessment (intellectual, psychomotor and speech and language assessments)
• Depending on the clinical suspicion and genetic test results, specialist consultations (cardiology, endocrinology, etc.)

Multidisciplinary follow-up is organised as follows:

• Regular paediatric follow-up (with the treating paediatrician or a paediatrician at HUDERF experienced in developmental delay/intellectual disability)
• Paediatric neurology consultation twice a year during the first two years, followed by annual consultations (history and the child’s development, clinical examination, new issues requiring management, assessment of communication skills and autonomy, screening for behavioural disorders)
• Regular genetics consultations, if further investigations are required
• Regular ophthalmology and ENT follow-up to screen for neurosensory disorders that could worsen the child’s condition
• Regular dental follow-up
• Multidisciplinary assessment (intellectual, psychomotor and speech and language assessments) on starting school, to adapt the child’s education (individual support in mainstream education, referral to specialised education), in collaboration with the family, PMS and PSE centres and the therapists caring for the child
• The child’s specific needs are reassessed at each consultation and after each assessment, discussed with the parents and documented in a detailed report

During adolescence, a transition consultation is organised at Erasme Hospital with the adult specialist responsible for managing the main condition (cardiologist, endocrinologist, diabetologist, gastroenterologist, etc.). Follow-up is otherwise continued under the coordination of the treating physician, with transmission of the updated medical record and the European recommendations.

The multidisciplinary team works in coordination with the people involved in the care of the child or young person with developmental delay or intellectual disability: family, therapists, family physician, school, PMS and PSE centres, support services and patient associations. Assistance is also provided with administrative procedures (registration with Phare, VAPH and Aviq; applications for increased family allowances; incontinence allowance; material assistance), etc.

Contact: SecMed [dot] NeuroPed [dot] huderf [at] hubruxelles [dot] be (SecMed[dot]NeuroPed[dot]huderf[at]hubruxelles[dot]be)