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Frequently Asked Questions

Physical form

 

The child’s articulations are very supple, and this is known as hypermobility. Their muscles are soft, and this is known as muscular hypotonia. By massaging the baby during its first months, muscles are mobilised thus making the child aware of its body, thereby facilitating future physiotherapy. Early education (implementing therapies at the earliest age) can be carried out in early diagnosis centres (CAMSP - Centre d’action médico-sociale précoce ; view the website: Service-Public.fr) or by special education and home care services (SESSAD – view the website Service-Public.fr), or by independent practitioners. 

How should I monitor my child’s growth?

People with Down syndrome grow differently from the rest of the population, and this is why it can be useful to use specific height-weight growth charts. In fact, weight, height and head circumference develop with age according to the growth rate of each child, which it is possible to gauge by comparing it to other growth rates of children the same age with a comparable medical situation.

Several of these specific curves have been published in the medical press. Some are accessible via Internet.
You may especially be advised to view the website Growth Charts for Children with Down Syndrome- Height & Weight – Head circumference.
Generally speaking, our children are shorter than average.

How should I monitor my child’s weight?

Weight is often lower than in other children in their first year of life because of feeding difficulties. As a newborn, it is frequent for the child to gain very little weight, and it can take several weeks before the baby regains its birth weight. It is advisable to monitor the child in the first weeks with the help of a nurse, without feeling anxious.

The weight curve of babies does not correspond to the weight curve presented on the health booklet, even for height. Their weight tends to increase progressively, often becoming heavier than average compared to other children as from 4 years old. Monitoring height and weight charts is therefore important because they enable you to adapt food intake to physical activity, which is often insufficient. For example, acquiring autonomous walking takes place on average around 30 months.

Several of these specific curves have been published in the medical press. Some are accessible via Internet.
You can view the website Growth Charts for Children with Down Syndrom (Height & Weight site in English – Head circumference.

It is a good idea to weigh the child each week, at the same time and in the same conditions. Teenagers tend to gain weight, so you may like to trace their weight curve on a chart with them.

How can I help my child become aware of his or her body?

To improve awareness and prepare for better control of facial muscles, you should stimulate the child’s lips, tongue and jaw using simple gestures like lightly tapping around the child’s mouth with a finger, and massaging the inside of the cheeks and gums with a silicone toothbrush, etc. To prepare for language, you can do blowing exercises for example. Blowing mobilises the cheeks and tones the lips, thereby helping verbal expression.

Drinking though a straw is a good exercise to help close the mouth. Make sure the child holds the straw properly between the lips rather than the teeth. This exercise helps to become aware of lip movement and to strengthen muscles and the jaw, which will improve autonomy when feeding. Generally speaking, between 1 and 3 years, it is recommended that the child drinks as often as possible through a straw.

How can I improve my child’s physical form?

To practice lip movements, the child can do little exercises in front of a mirror. For example, do “ooo” or “eeeeee” sounds by exaggerating lip movements. You can also do little kisses with pursed lips.

To strengthen ankles, the child can jump on a trampoline with, if necessary, a bar used for support. The child can also balance on a seesaw, supported by an adult. Like this, the child learns arm and leg coordination and balance. Between the age of 2 and 3, you can start putting the child on a rocking horse. This is also a good balancing exercise.

Can occupational therapy help?

Occupational therapy is the use of treatments for all age groups, to help people to recover or maintain autonomy in daily activities. To reach their goals, the occupational therapist proposes solutions using technical aids to adapt the client’s environment according to their specific needs and capacities. When the child is small, the occupational therapist tries to diminish the consequences of hypotonia and ligament hypermobility using mechanical aids (like cushions) so that the child, well-installed, can use his hands to grab and play, and not for staying upright.

The occupational therapist also develops the child’s learning capacities and fights an inert, passive attitude. The therapist seeks to encourage initiative and autonomy in daily life, according to the person’s age.

Therapy sessions take places in close collaboration with parents and educational staff so that the child is able to make progress in an environment that is suitably stimulating and tailored. Starting from childhood, the occupational therapist helps the person their whole life long to adapt their environment to their difficulties.

How can physiotherapy help?

Baby takes more time to react and move about due to hypotonia. Muscular hypotonia must be reduced to help the baby become aware of his body, to support therapy and handling and to develop postural reflexes. It is essential for the child to see a physiotherapist who contributes to the newborn’s motor development, prevents potential postural problems, and strengthens muscular potential in the teenager and adult.

Muscular hypotonia and slowness in acquisition means that the child takes longer to see, hear, feel and move about. This is why it is vital for the child to have appropriate physiotherapy sessions from a very early age (around 6 months). Make sure the sessions don’t tire the child out.

Physiotherapy prevents, identifies and treats frequently occurring orthopaedic problems, which hinder motor activities: subluxation of the patella, flat feet, lower back pain (back too concave), dorsal cyphosis (rounded back), etc. For example, if the patella is subluxated, which means if it is mobile on walking instead of staying in place, this leads to a painful rubbing in the knee, resulting in the child’s refusal to walk.

What are the objectives of physiotherapy?

The physiotherapist’s objectives for the small child are numerous :

  • Curtailing and reducing muscular hypotonia using mechanical and sensory stimulation.

  • Helping the baby to become aware of the body by slow, enveloping touch (massage, pressure…).

  • Bringing out, supporting and developing visual contact, vocalisation, hearing, attention and concentration, to encourage the child to participate actively and with pleasure, using either partial or full body movements, according to the child’s rhythm.

  • Accompanying the child by supporting motor skill progress, especially through handling objects.

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    Rapidly and regularly teaching good gestural habits.

This therapy can be done within a group or individually according to the child’s needs and development, with the active participation of parents in close collaboration with the people monitoring the child. Therapy must be adapted to the child and must always represent a source of improvement. If the child stops making progress during therapy, then the exercises proposed should be reassessed or changed. Therapy must not exhaust the child, which would be counterproductive.

How can speech therapy help?

Speech therapy encourages the emergence and development of oral, written and alternative communication, which means everything other than written or spoken. Before working on language, the speech therapist makes sure there are no physiological obstacles that would prevent language acquisition: difficulties breathing, swallowing difficulties, palate, cheeks or lip mobility. There is not a single specific way that Down syndrome people speak, but a few constants have been noted, such as word reduction and syntax simplification. Stuttering, vocal problems and retardation in speech and language whether written or spoken, are frequent.

The frequent occurrence of severe facial hypotonia can mask a real desire to communicate. Verbal interactions (gurgling, noises) are often expressed with a time lapse. The speech therapist may propose crucial stimulation for implementing communicative functions, start pre-conversational exchange with the adult, and compensate for speech and language difficulties as well as problems in the handicap-specific nose, mouth and facial sphere.

What are the aims of speech therapy?

At all ages of life, speech therapy is useful:

  • In baby’s first months, the work is quite global: it is above all about multi-sensory and muscular stimulation (sight, hearing, touch). As the child grows, the speech therapist can provide good advice about teaching the child how to chew and swallow. The therapist will therefore make sure that the child breathes through his nose, uses his lips and moves his tongue properly.

  • In older children, to accompany the emergence of speech and language construction, and to promote the social dimension, the speech therapist monitors chewing.

  • Throughout the person’s life, speech therapy is useful for learning and consolidating language construction, reading, writing and calculation.

     

  • As the person gets older, the speech therapist helps the individual to maintain relationships with others, as well as keeping up the person’s interests.

Some people find it hard to use speech or writing as a way of communicating. The speech therapist seeks the best way for the individual to communicate with and relate to others. The speech therapist participates in the persons’ fulfilment and prevents some behavioural issues. A paradox is often observed among Down syndrome people: on the one hand, they have frequent difficulties in learning language, and on the other, they are very sociable.

How can osteopathy help?

Osteopathy does not treat the source of the problem, but it can help to relieve certain tensions and re-establish harmony in the body. However, inappropriate manoeuvres can have serious consequences for the child (like cracking the back and neck), because of the child’s natural fragility.

Before working on the child, the osteopath must be extremely alert and make sure the child doesn’t have a serious orthopaedic anomaly, like malformations of the first cervical vertebrae, responsible for mobility problems. Inappropriate cracking movements can displace these vertebrae and sometimes cause damage to the spinal cord.

How can psycho-motor therapy help?

Psycho-motor therapy sessions can help the baby to develop his or her motor skills harmoniously, to improve sensory faculties and capacities for expression. Sessions are carried out on individuals in early diagnosis centres such (CAMSP - Centre d’action médico-social précoce ; view the website Service-Public.fr), by special education and home care services (SESSAD - Service d’éducation spéciale et de soin à domicile ; view the website Service-Public.fr), or by independent therapists. These sessions are very beneficial for the child, as from a veryearly age (6 to 12 months).

By setting up simple games, in groups or for individuals, these sessions help the child to develop motor skills harmoniously, to improve sensory faculties and to improve the child’s capacities for expression.

What are the objectives of psycho-motor skill therapy?

  • To develop motor skills harmoniously: the child acquires motor skills later and less harmoniously compared to other children. Repeating small, precise gestures to the child can help correct this problem. In addition, the child often has difficulties locating him or herself in space or locating parts of the body (high/low, in front/behind). The exercises also consist in helping the child to adopt certain postures that are difficult: standing up, walking slowly with balance, etc.

     

  • To improve the child’s sensory faculties when the child is affected by certain sensory problems (auditory, visual and tactile). The child can also have difficulties with attention, memory and listening, and tactile discovery of the world around him. Psycho-motor therapy stimulates the different senses thus enabling the child to use his body as harmoniously as possible. The objective is to help the child use his or her body better. Improving motor problems linked to muscular hypotonia is above all the physiotherapist’s field of action.

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    Improving capacities for expression and providing a feeling of security in society. The social behaviour of children is often disturbed. They are frequently passive and easily tired (long time lapses between a request and a response to stimulation). They have a fluctuating attention span and sometimes behavioural troubles (opposition, withdrawal), which does not help them to develop better. Psycho-motor therapy, by establishing a framework (place, time, therapist), creates a feeling of security and favours the child’s capacities for expression.

What happens in a psycho-motor therapy session?

Psycho-motor sessions take place in a group or individually, according to the issues that need to be addressed for the child and according to the child’s age. This therapy should take place in close collaboration with the parents who are the best witnesses of their child’s progress, as well as with the other therapists involved with the child’s development (speech therapist, physiotherapist, occupational therapist, educators or teachers), if possible. If it is introduced at an early age, psycho-motor therapy prepares the way for a future activity once the individual reaches adulthood. For some people, it is still useful in adulthood.

How about dentition?

The first teeth tend to arrive late, sometimes not in the normal order, and the milk teeth are sometimes definitive. Bad positions are frequent. Some teeth are definitively missing. The child’s teeth should be dealt with once jaw growth has finished. Milk teeth tend to fall out later than usual. Daily tooth brushing, twice a day is very important.

If the young child has difficulty brushing, you can give them a glass of water at the end of a meal, which helps to clean the mouth. You can also dry brush without toothpaste, which removes dental plaque.

Will my child go to the dentist?

From the age of 4, the child should be seen by a dentist on a regular basis, so that, thus familiarised, the child goes along calmly. The dental check up is vital. Tooth decay is not more frequent in milk teeth, and is even rarer in definite teeth. On the other hand, chronic gum inflammations are more frequent, which justifies careful tooth brushing, regular visits to the dentist and frequent scale removal.

How should I take care of my child’s gums?

It is a good idea to massage the child’s teeth with a finger, so that they are well looked after. As they tend to be fragile, careful surveillance is recommended. It is very important to teach, as from a very early age, a rigorous brushing technique of gums and teeth to prevent gingivitis (gum inflammation) in adulthood.

Acute gingivitis is painful and adults will not always complain about it. Refusal to eat can be a sign of this. The consequence of chronic gingivitis is the loosening of teeth and tooth loss. Using the toothbrush can be a way of preventing this inflammation.

What can I do if my child grinds his teeth?

Bad dental occlusion is frequent and a source of discomfort, leading to tooth grinding, difficulties in chewing and articulating. A specialised consultation in occluso-dentistry is therefore advisable. Some children grind their teeth (Bruxism), which can be explained because of a bad dental occlusion. If it proves to be a source of discomfort, you should talk to your doctor about it.

How do my child’s teeth grow?

The first dentition can disappear later than usual and the order of the appearance of teeth is often random. Premolars may grow before all the incisors for example. Some teeth can be a bit strange, for example a double pointed tooth (split). However, this first dentition can sometimes stay after the appearance of the definitive dentition, so there can be a double dentition for some teeth. Some definitive teeth, the molars for example, are not always present.

It is not necessary to start doing X-rays (tooth panoramic) to see if the germ of the tooth is there or not. In fact, due to a greater sensitivity to X-rays, the risk of developing leukaemia would become higher at any age. This is why, only essential X-rays should be carried out. Often, it takes just a little patience to observe that the long awaited tooth is indeed growing.

Should my child wear a dental brace?

Orthodontic treatment may be necessary if the teeth are poorly implanted. However, it may be necessary to weigh up the pros and cons between expected benefits and the difficulty the young child may experience wearing a restrictive brace.

How can therapies help?

Therapy helps patients to use their aptitudes optimally. Although much more remains to be done, progress over the last years has been considerable thanks to researcher practitioners who are continuing their work on cognitive problems: memory, learning, attention, general intelligence, etc. Doctors, neuropsychologists, psychologists, speech therapists, often grouped in associations, collaborate to better understand the patients. They contribute to research on causes and the mechanisms of disorders considering each person’s history and environment.

The development of the neurosciences, investigations and evaluations, which are continually being refined (IRM, PET-scan, neuropsychological tests, etc.), favour the emergence of increasingly specialised and developed therapies. Knowledge about the precise development of a child with Down syndromemeans adapting learning according to the readiness of the nervous system. Use of adapted stimulation methods result in a number of optimal acquisitions without discouraging the person. Therapeutic methods are therefore in constant progress.

Are all the different types of therapies necessary?

Some methods are very demanding even if they may be desirable, and they should not be called upon if they risk upsetting the person’s development… Perfectionism is a terrible temptation!

What can be done to help the child become happy and fulfilled in their adult body?

The boy or girl, at the moment of adolescence, then in adulthood, has, just like all other young people, an expanding affectivity, which the Down syndrome person has difficulty controlling. Down syndrome individuals are very, and even extremely, expansive in the way they express their feelings Their parents have to teach them early that, even if loving someone is marvellous, some gestures belong to personal life and should not be made in public, that they shouldn’t kiss and cuddle everyone they meet and that friendship or love require mutual respect.

The teenager must learn that his or her body belongs to them and that nobody else has the right to touch them without their agreement: “do not do it if you don’t want to”. Heartache is sometimes deep and painful and difficult to recognize because the young person doesn’t express it clearly. It can be detected by an unusual sadness or a change in behaviour.

What about puberty?

In teenagers, acne is often quite severe, above all in boys. The scalp is oily and patchy hair loss is frequent. Mycosis is frequent and tenacious. For all these dermatological issues, the usual treatments are difficult to apply correctly and results are random. Try to find what is most suitable for the individual. 

How is the discovery of sexuality experienced?

Generally speaking, becoming a young man or a young lady is very satisfying. In any case, a consultation with the doctor for boys, and with a gynaecologist who is familiar with Down syndrome for girls, is useful both for the young people themselves as well as for their parents. The question of puberty and sexuality are often difficult subjects to approach, with or without Down syndrome!

How do young women experience sexuality?

The expression of affectivity is not expressed by a search for sexual relations as such. Holding hands and kissing represents the ideal. If there are sexual relations, they are not always satisfying and they can be upsetting because, what you see on TV or at the cinema is very different to what happens in reality.

How do young men experience sexuality?

Boys are no more in demand for sexual relations than young women. The importance of discussions with the boy, the family, the doctor, the psychologist, the educational team, is no less crucial. Of course, everyone is unique and there is no ready-made solution.

It is advisable to talk to the teenager about puberty before it starts. If there is a big brother or a big sister, becoming like them is pleasant and reassuring.

What happens at my daughter’s menopause?

Menopause often occurs early, sometimes around age 40, without hot flushes. It is preceded by a period of pre-menopause, which is variable in duration, and during which insufficient secretion of progesterone may give rise to irregular periods, which are sometimes very abundant. This temporary hormonal imbalance can be corrected by administering natural progesterone 10 to 12 days a month until the periods disappear. At this period of life, uterine fibroids may occur which could need surgery.

When menopause is complete, low dose hormonal treatment will be proposed if behavioural problems, irritability or a tendency to depression set in. Surveillance of demineralisation using bone density tests is necessary because it is frequent and needs attention if it occurs.

How will my child age?

As in the general population, the quality of aging depends on the quality of support received throughout childhood and adulthood. It is probable that children who are properly supported today will age better than their predecessors.

Some people age abnormally fast, apparently without there being any particular medical problem or identified reason. However, it is important to carry out a medical and psychological examination to search for a cause (sleep apnoea, thyroid anomaly, celiac disease, epilepsy, depression, grieving, etc.). The team following the person then seeks the best solution to each problem.

For people aged over 50, a series of problems very similar to Alzheimer’s can appear and which require recourse to specialists (geriatric doctors or neurologists).

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