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That the announcement of Down’s syndrome diagnosis took place during pregnancy or at birth, parents of children with Down’s syndrome often reportthe same feeling of abandonment and dismay at the announcement of the handicap. A lot of questions are running through their heads, especially if they are not familiar with Down’s syndrome, also called Down syndrome : what degree of handicap will my child have? How does the disease manifest itself on a daily basis? What are its repercussions on development, language, socialization? Which structures to turn to to help my child? Does Down’s syndrome have any consequences for my child’s health?
Children who must be followed and supported more
While many people with Down’s syndrome achieve a certain degree of autonomy in adulthood, to the point of sometimes being able to live alone, a child with Down’s syndrome requires special care, to be, later, as autonomous as possible.
At the medical level, trisomy 21 can cause congenital heart disease, or cardiac malformation, as well as digestive malformations. If certain diseases are less frequent in trisomy 21 (for example: arterial hypertension, cerebrovascular disease, or solid tumors), this chromosomal abnormality increases the risk of other pathologies such as hypothyroidism, epilepsy or sleep apnea syndrome. A complete medical check-up is therefore required at birth, to take stock, but also more often during life.
Regarding the development of motor skills, language and communication, support by several specialists is also required, because it will stimulate the child and help him develop as well as possible.
Psychomotor therapist, physiotherapist or speech therapist are therefore specialists that a child with Down’s syndrome may have to see regularly in order to progress.
CAMSPs, for weekly support
Everywhere in France, there are structures specializing in the care of children aged 0 to 6 with disabilities, whether they are sensory, motor or mental deficits: CAMSPs, or early medico-social action centers. There are 337 centers of this type in the country, including 13 overseas. These CAMSPs, which are often installed in the premises of hospitals or in centers for young children, can be versatile or specialized in supporting children with the same type of disability.
CAMSPs offer the following services:
- early detection of sensory, motor or mental deficits;
- outpatient treatment and rehabilitation of children with sensory, motor or mental impairments;
- the implementation of specialized preventive actions;
- guidance for families in the care and specialized education required by the child’s condition during consultations, or at home.
Pediatrician, physiotherapist, speech therapist, psychomotor therapist, educators and psychologists are the different professions involved in a CAMPS. The aim is to promote the social and educational adaptation of children, whatever their degree of disability. In view of his capacities, a child followed within a CAMSP can be integrated into the school system, or preschool (day nursery, crèche…) classic full-time or part-time. When the child’s schooling arises, a Personalized Schooling Project (PPS) is set up, in connection with the school that the child will potentially attend. For facilitate the child’s integration into school, a school life support worker (AVS) may be required to help the child in his daily school life.
All parents with a child under 6 with a disability have direct access to CAMSPs, without needing to prove the child’s disability, and can therefore contact the structure closest to them directly.
All the interventions carried out by the CAMSPs are covered by the Health Insurance. The CAMPS are 80% funded by the Primary Health Insurance Fund, and 20% by the General Council on which they depend.
Another option for the weekly follow-up of the child with Down’s syndrome is to use liberal specialists, which is sometimes an expensive choice by default for parents, due to lack of space or CAMSPs nearby. Do not hesitate to call on the various associations that exist around trisomy 21, because they can refer parents to different specialists in their region.
Precise and specialized lifelong monitoring offered by the Lejeune Institute
Beyond the weekly care, a more comprehensive care by specialists in Down’s syndrome may be judicious, to assess the child’s disability more precisely, to obtain a more detailed diagnosis. In France, the Lejeune Institute is the main establishment offering comprehensive care for people with Down’s syndrome, and this from birth to end of lifeBy a multidisciplinary and specialized medical team, ranging from pediatrician to geriatrician via the geneticist and the pediatrician. Cross-consultations with different specialists are sometimes organized, to perfect the diagnosis as much as possible.
Because if all people with Down’s syndrome share an “excess of gene”, each has its own way of supporting this genetic anomaly, and there is great variability in symptoms from person to person.
« Beyond regular medical follow-up, it may be relevant at certain stages of life to have a complete assessment, including in particular language and psychometric components », Can we read on the site of the Lejeune Institute. ” These assessments, which are generally carried out in close collaboration with the speech therapist, the neuropsychologist and the doctor, can be useful for discern the orientation that will best suit the person with intellectual disabilities at the time of key stages of his life : entry to nursery school, choice of school orientation, entry into adulthood, professional orientation, choice of a suitable place to live, aging … ” The with neuropsychologique is therefore particularly suitable for helping parents make the right choice regarding their child’s education.
« Each consultation lasts one hour, for a real dialogue with the family and to tame patients who are sometimes very anxious “, Explains Véronique Bourgninaud, communications officer at the Lejeune Institute, adding that” this is the time needed to make a good diagnosis, to deepen the questioning and clinical examination, to assess the needs and find concrete solutions for good day-to-day care. A social worker is also available to support the parents of children with Down’s syndrome in their various procedures. For Véronique Bourgninaud, this medical approach is complementary to regional follow-up with CAMSPs, and registers for a lifetime, which gives the Institute specialists a global knowledge of people and their syndromes : the pediatrician knows what becomes of the children he has followed, the geriatrician knows the whole story of the person he welcomes.
The Jérôme Lejeune Institute is a private, non-profit structure. For patients, consultations are therefore covered by Health Insurance, as in the hospital.
Sources and additional information:
- http://annuaire.action-sociale.org/etablissements/jeunes-handicapes/centre-action-medico-sociale-precoce—c-a-m-s-p—190.html
- http://www.institutlejeune.org
- https://www.fondationlejeune.org/trisomie-21/