The baby with Down Syndrome will develop similarly to a small one without this genetic, although at a slower rate alteration
About 3 out of every 10,000 children born with Down syndrome (data of 2011 reported in the latest report of the Spanish collaborative study of 2012 congenital malformations), a genetic disorder caused by an extra chromosome pair 21 (that is called trisomy 21) which is responsible for certain dysfunctions affecting various organs, especially in the brain. They are, therefore, people with intellectual disabilities that have greater difficulty processing information, to learn or to react promptly, but also presenting some determinants of physical health that need to pay close attention from the first moments of life.
You can have a prenatal diagnosis of Down syndrome or be detected once the baby born: “diagnosis can be done at the time of childbirth, gynecologist observe the physical characteristics of this syndrome and to ask for help the pediatrician that you give your opinion. Diagnosis is confirmed with a genetic test, karyotype, which determined the chromosomal alteration”, says the expert on early intervention of the Federation Española de Síndrome de Down (Down Spain), Isidoro Candel.
In both cases the first thing is OK this unexpected and difficult circumstances, and be well informed to look after the small in the best possible way, making you enjoy maximum physical, mental and social well-being. Your role as a parent is fundamental for the development of their abilities and qualities; supported by a team of multi-disciplinary professionals in various areas that will prevent and palliate, if possible, many of the obstacles that you can find. Down’s syndrome is not a disease as such and, therefore, do not have any specific medical treatment; but does it mean many difficulties that you will have to overcome. Seek advice and assistance whenever you need it; There are many resources and many people at your disposal.
Dr. Pepe Borrel, Down Spain health expert recognizes in this regard that “not all professionals are prepared in the same way to deliver the news. In general, parents referred to the experience as fairly negative. But he is should tell them that an Association of parents there are very close in their same circumstances, who are willing to support them and let know them. The information given is more positive. Anyway, this must be balanced, neither pessimistic nor overly optimistic; realistic. It is essential to speak much more than person syndrome”.
The development of children with Down syndrome
Your baby will develop similarly to a small one that has Down syndrome, although at a slower rate. Typically, showing some particularities; for example, for the majority of babies with Trisomy, social development is a strong point and takes not much smile and interact with others, while that motor progress and the language learning costs them more. Although you always have to keep in mind that each child is a world and stimulation plays a fundamental role.
These are the main features of the baby with Down syndrome in different areas of development:
- Motor development: children with Down syndrome are more awkward and less balanced and can appear more slack (low muscle tone). In fact, not walk up to 20-22 months, on average, while children generally walk already at 13 months. According to the expert in attention early in the Federation Spanish of Down’s syndrome (Down Spain) Isidoro Candel: “muscular hypotonia, which is higher in children with Trisomy that tends to slow down its engine development, in others, so it takes a little more to acquire motor milestones: sitting, the crawling, autonomous walking…” We must not forget that, in addition to hypotonia, is no ligamentous hypermobility. But physical therapy, which is more specific than the simple motor stimulation treatment, will help these little ones to improve their skills and motor patterns.”
- Communication: children with trisomy 21 understand more than what they can express that are handled quite well with the use of gestures to communicate, but they have more difficulty with speech. Stutter the first syllables over the 11 months, and begin to tell the first words with meaning at 18 months, on average, against the 8 and 14 months respectively from the rest of the babies.
- Social and emotional development: this is one of the areas in which the babies with Down syndrome stand out more, since much like to look at the face, smile and meet people. Two months of life of media already they smile when spoken, compared to the month that takes the rest of children. They learn to understand facial expressions, tones of voice, body postures, everything that we use to express how we feel. Small are very social and are constantly looking for the attention of the others. Therefore, all around these children may benefit from a special attachment.
- Sensory development: since motor development is slower, it can have babies with Down syndrome experience a delay in your ability to explore what surrounds them. Thus, it takes about six months of media in reaching for objects and catch them by hand, compared with the four months that leads them to the rest of the babies. In addition, sensory particularities, are also given as it is the refusal to feel wet or dirty hands.
- Learning and Cognition: cognition, his strongest point is visual learning, from the verbale. I.e., process and remember better information that come to hear that (shows best skills of visual short term memory than of verbal). When it comes to learn, it is possible that children with trisomy 21 not persist much like other small in the solution of a problem, and may even resort to good social skills to distract the person you are trying to teach them.
Ultimately, children with Down Syndrome should have a daily life full of stimuli and opportunities to learn and develop (in need of extra support and a consistent practice in some areas than in others). What is essential is devote time and be much with them, and provide them with love and security. We can take advantage of every moment of the day and do a massage to our small when you wake up, during bathing practice some exercises that strengthen your muscles, make grimaces or Tickle to stimulate their emotional and sensorial capacity, or read a bedtime story.
That Yes, the overload of stimuli is not good and should not require them too. It should take into account that a child with Down syndrome is more vulnerable against the stress.
Early intervention (from birth to age 6) programs are fundamental to improve the abilities of children with Down syndrome
Known once main peculiarities that presents a child with Down syndrome can understand even better basics which is early intervention, which consists of a set of activities and exercises of stimulation that are conducted with little in their first years of life (from birth to age 6), to improve their capabilities. These activities are adapted to each case and are inserting in everyday life, to design an environment that promotes their development and involvement of the entire family.
Acting in these early years is very important to get the proper development and improve the degree of disability, already is the time of greater ability of the brain to produce synaptic contacts and improve brain function (up to two or three years are established most of the synapses in the cerebral cortex).
Own pediatrician, or the different associations of Down syndrome, can guide you to a good early service carrying out various forms of therapy, physical stimulation, methodologies, development of cognitive techniques, training of social skills and emotional intelligence, or even playful training. It is, therefore, a coordinated global development involving many professionals, from psychologists to physiotherapists, speech therapists, educators, expert in psychomotricity, or educators of the infant school.
But it always depends on the biological qualities of every small, environment in which to grow, and of course, love received, these early intervention programs are essential for children with trisomy 21. Pepe Borrel, doctor and health expert from the Spanish Federation of Down syndrome (Down Spain), considered the early care “one of the three basic pillars for a person with Down syndrome, along with a program of health and specific social policies: all three are just as important in order to be integrated later school-wide” Labor, and at all social levels”.
For its part, the psychologist Isidoro Candel, Down Spain early care expert says that: “early care, which began to be applied in Spain to children with Down syndrome at the end of the seventies of the last century, have been a considerable advance in the treatment for these people. They are very spread by all Spain and its efficacy has been demonstrated in numerous research works; not only benefits have to do with the progress of the child (which receives a complete stimulation and is making ever more autonomy), but also with the advice and, especially, emotional support provided to the parents and the family”. In addition, you must not forget its preventive work to other secondary problems that can go.
The toys and games are a valuable resource to stimulate the child with Down syndrome
Play and leisure activities are excellent means to stimulate your child. It should play every day with him, but always keeping in mind that toys and activities should be adapted to their abilities (not according to their chronological age), so it is preferable to opt for those that are designed for younger ages and they are easier to understand and, gradually, increasing the complexity. For example, a baby with Down syndrome takes, on average, about 20 months to be able to build a tower of two cubes, compared with 14 months that usually take children who do not have this genetic alteration.
It is important to stimulate their curiosity and promote to play with his siblings or other children, because that will benefit more than the opportunities of the game if you have a partner to show you how to play (but don’t do it for him). It is normal that children with Down syndrome do not appreciate all the possibilities offered by a toy and use it repeatedly, or hitting it and throwing it.
And what if they play with the doll Baby Down? It’s a doll that has the physical characteristics of this syndrome, which will make the small be identified with him, and includes a guide to care. A part of the benefits obtained with the sale of this doll goes to Down Spain, to improve the lives of people with Trisomy and their families.
That Yes, must never lose sight of your little when playing, since it will tend to lead to mouth anything that catches your attention, there is a significant risk of choking. In addition, according to the suggestions of the Ibero-American Foundation 21 Down, have to have specific precautions as moderate usage of the swings, since movement can mislead the child or choose tricycle correctly so that it offers the best possible stability. And as you go grow and showing preferences for video games, you always have to choose those that are simple and educational and avoid to pass over one hour a day playing with them (can harm cognitive development)
Down Spain Web www.mihijodown.com will find a lot of game proposals, organized by ages & stages.
The genetic load in children with Down syndrome makes them more likely to suffer certain disorders or diseases.
In addition to the degree of intellectual disability (which is variable in each case, being mostly light or moderate), “to level of health, the problem are pathologies commonly associated with Down syndrome,” says the health expert from the Federation Española de Síndrome de Down (Down Spain), Pepe Borrel. The genetic load, presenting people with trisomy 21 makes that an imbalance is generated in the way in which genes direct and regulate the development and functions of various apparatus, organs and body systems; What makes them more likely to suffer from certain disorders or diseases. Does not have to be always like that, children with a health may be good enough or with minor health problems, but the goal is to learn what can happen to them to minimize it, treat it, relieve it, and whenever possible, prevent it.
“Early detection and treatment will be possible to compensate for the adverse effects,” stresses Dr. Borrel. Many of the health problems will have a simple resolution, but others will require medication, some physical therapy and, in some cases, will be more complicated treatments or even surgery. The key is to make explorations and regular health checks.
You must also take into account that your child may have more difficulty to tell you that you are wrong and explain what happens. Moreover, it has been shown that many people with Down syndrome have reduced sensitivity to certain types of pain.
Thus, we must pay attention to:
- Heart problems: about half of children with Down syndrome are born with such problems. However, as Isidoro Candel, expert on early care of Down Spain “heart disease is a problem that is detected very soon. surgical interventions are usually made in early and the evolution of the child is positive.”
- Growth problems: the low or short stature is a characteristic feature of trisomy that is related to the growth hormone deficit and also with certain pathologies or nutritional problems. Thus, should monitor the size and weight during the first years of life, according to the specific growth charts for Down syndrome.
Alterations of the thyroid gland is another factor that influences the growth (and also in cognitive function), being typical cases of hypothyroidism in people with Trisomy.
- Ear and nose problems: is often the baby has ear (otitis) infections, Earwax plugs forming him (due to having narrow ducts), as well as to present problems of hearing, which may have an impact on the development of the language and also to alter behavior. We advise you to early detection of hearing loss (loss of hearing) in the first six months of life.
On the other hand, congenital nasolacrimal duct occlusion appears in 5-6% of infants and manifests as tearing and discharge before the month of age.
- Respiratory problems: asthma, colds and other infections that affect the respiratory tract, snoring, and sleep apnea syndrome are common. This last syndrome occurs due to obstruction of the Airways, which is favored by the typical physical characteristics of Down syndrome (neck short, hypotonia of the language or adenoid hypertrophy). This multiple Awakenings are generated, and therefore is not a good night’s sleep.
- Vision problems: the vast majority of children with Down syndrome have glasses. And it is that 75% of people with trisomy 21 has eye problems, being the most frequent strabismus, farsightedness and nearsightedness. Cataracts can be congenital (be present from birth), or develop along life but, like glaucoma, can occur during childhood. Therefore, all children with Down syndrome must pass an eye exam in depth in the second year of life (including refraction and fundus) and again at the age of four: If the farsightedness has not been developed at this age, it is unlikely to do it later. Then should be evaluated sight at least every two years.
- Dental problems: this area is especially difficult, since it is physiologically conditioned. People with Down syndrome have weak orofacial muscles, resulting in that position of the mouth slightly open that characterizes them, coupled with an anterior displacement of the lower lip. The size of the inside of the mouth is also reduced and, therefore, the language seems more (Macroglossia).
From here, it is common having dental problems such as gingivitis (swollen gums and bleed easily), periodontitis (the infection advances gum to bone), malocclusion and bruxism (grinding of teeth). Gingivitis is very common, especially in children aged 3 to 9, as well as bruxism, which tends to be more intense during the day than at night.
In addition, children with Down syndrome show a delay in tooth eruption, genetic. His first tooth usually appears at 14-18 months, while the rest of the children already have 6 or 7 months. And the permanent dentition begins about 8 years, with 6 years of the rest of small. The size of the teeth of children with Trisomy, in comparison with the rest of children, is higher in the teeth of milk and lower in the permanent dentition.
All these problems it is usual that join other bone and articular as unstable hips, dislocations, flat foot or scoliosis; intestinal, dermatological as xerosis (dry skin) or alopecia areata, and also neurological.
And finally noted that, although there are fewer cases of cancer in persons with Down syndrome, leukemia is an exception and is common in child age (even before the three years of life), and some studies indicate that its incidence is up to 30 times higher in children with Trisomy compared with the general population of the same age.
Down syndrome and vaccines
Vaccination is a quite effective remedy of prevention of a number of diseases, infections and their recurrences that often suffer from people with Down syndrome, particularly during childhood (mainly from the respiratory tract). And it is that this syndrome is usually go to associated a multifactorial immunodeficiency, bearing in mind, moreover, that there are certain factors reducing the immunogenicity of vaccines such as obesity or celiac disease.
Thus, the syndrome Spanish Federation of Down (FEISD) and the Fundación Catalana syndrome Down (FCSD), with the collaboration and consensus of the Committee of vaccines of the Spanish Association of Paediatrics (CAV-AEP) and the Spanish Association of vaccinology (AEV), have developed a schedule of vaccinations for people with Down syndrome, who should be considered as complementary calendars of current vaccinations in Spain especially of the EPA, in which it’s based. Thus, there are specific recommendations as, for example, that vaccines pneumococcal and hepatitis, until now not included or only included in some regional infant immunization schedules, are especially indicated in people with Trisomy, and should be given systematically, since Down syndrome is considered a risk factor for invasive pneumococcal disease. Children with this syndrome often suffer acute otitis media, sinusitis and pneumonia, pneumococcal being primarily responsible for these processes. The recommendation of this calendar is to start vaccination two months of life.
As for hepatitis A, regular attendance of children with Down syndrome to specialized centres favors the horizontal transmission of the virus that causes the disease. Also, could be a co-infection in patients with chronic hepatitis B (which the predispose Down syndrome), which would acquire a special gravity. In this case it is advisable to start the vaccination at 12 months of age.
Finally, note that it is essential to meet the systematic vaccine guidelines established in each community in a strict manner.
Breastfeeding provides the nutrients that the baby needs with syndrome of Down, in addition to presenting immunological advantages and attachment with mother
Food is an area that should be monitored fairly in children with Down syndrome. For them, as for any baby, breastfeeding is recommended: provides the nutrients they need, in addition to presenting attachment and immunological benefits with the mother. However, babies with trisomy 21, because of muscle weakness in the language, often have trouble coordinating sucking and swallowing. Thus confirms it the health expert from the Federation Española de Síndrome de Down (Down Spain), Pepe Borrel: “hypotonia, and the special configuration of the mouth, small, large or hypotonic tongue, can complicate the process of sucking”.
This, along with a later dental growth, also will affect them when go introducing gradually the complementary feeding, and may cost them more chewing and swallowing as well as accustomed to solid food texture. Therefore it is necessary to be patient if they take more time to each meal and to watch that they don’t atraganten. But, as says the doctor Pepe Borrel: “in early care programs that already are working with the speech therapist and other professionals”, by which little by little the problem will be minimizing.
However, psychologist and an expert on early care of Down Spain, Isidoro Candel, makes any comment in this regard: “people with Down syndrome are very different, and not all children work equal and do the same things: some chew soon and others take much longer;” but you always have to take into account education and the treatment of these little ones at home. We should not assume that a child with Down syndrome does not do some things on the basis of disability; rather it may be because he is is not trying to him properly, Coddling him too, or avoiding efforts; or, on the contrary, demanding more than necessary. I.e., that may have difficulty chewing by a poor dental implantation, for example, but also because at home has grown to take only baby food jars, since it rejects the solids, although then it is able to eat a steak and chips because they like him.”
On the other hand, in relation to the digestive system, as there is a lack of tone of the abdominal muscles, and even certain digestive malformations may occur, it is common that your son suffer constipation. For this reason it is important that you ensure that your diet is rich in fiber.
And, finally, he has to take into account that, basically due to intestinal malabsorption, children with Down syndrome may have food allergies or intolerances. In fact, celiac disease or gluten intolerance is more common in these small, “still the symptoms usually little clarifiers. “So it recommended discarding it to determining the existence of antibodies from the two or three years, and, again, to 6-7 years, but taking into account that may arise throughout life”, indicates Pepe Borrel.
In general, you should try what your son, as any child, to take a balanced diet, without forgetting that you practice physical exercise to avoid obesity.
Child with Down syndrome to refer to the nursery with the same age as the rest of the children promotes socialization, enhances tolerance and coexistence, and facilitates the imitation of behaviors
Arrived the moment in which the baby can go to daycare is normal to doubts and fears arising parents if worn or not, or how it will be its integration into these centers if their development is lower than the rest of the children. There is not an ideal age for babies with Down syndrome start to go to the kindergarten, or basic requirements to choose one or another; that will depend on the circumstances of each family and the personal decision of the parents. But it is very positive that your son admission is like the rest of the children. Thus implies the Isidoro Candel psychologist, expert on early intervention of the Spanish Federation of Down syndrome (Down Spain): “before age 3, children with this syndrome are enrolling at nursery schools (kindergartens) with the other students, experience that is proving very successful for them and the parents themselves”. That also confirms the psychologist and expert in education of Down Spain, Ana Belén Rodríguez: “that children attend the nursery with the same age as the rest of the children promotes socialization, promotes tolerance and peaceful coexistence, and facilitates the imitation of behaviors”. In addition, it is a good step that paves the way and makes subsequent enrolment in an educational centre.
But the dilemma is whether then they must attend a specific Center or not. According to Down Spain, 90% of people with trisomy 21 access to ordinary school, with a great integration, especially in the first cycle. “In our country, the modality of schooling for pupils with special educational needs is, in principle, ordinary Central, i.e. a running, and normal school with the supports that they need: therapeutic pedagogy, language, physical therapy and educational technical assistant…” “Virtually all children with Down syndrome are enrolling at age 3-4 in these centers, but each case is different, and the modality of schooling must always be placed according to the characteristics of each student”, says Isidoro Candel.
Ana Belén Rodríguez also believes that it should be thus: “the schooling of pupils with special educational needs and educational attention must always be based on the principles of standardization and school inclusion. Students with Down syndrome have the right to be schooling in ordinary centres, with specific supports requiring”. This expert explains how the process currently and options parents have: “when your child initiates the second cycle of pre-school (3-6 years), once marked the box of special schooling application needs and made the presentation on the chosen Center, will be the team of educational guidance (EOE) who gets in contact with you to the corresponding assessment and issue an orientation of type or mode” most appropriate schooling for your son with Down syndrome. “The Spanish education system collects, under current legislation, various forms ranging from the end of greater integration to the most excluded: Center regular, ordinary Center support, regular Center with preferential schooling for a particular disability, specific classroom in Central ordinary, schooling combined to an ordinary and a specific Centre, Center specific or special education”.
Although the majority of children with Down syndrome are easy to handle, many preschoolers are more complicated, in part because they are not yet able to communicate in an efficient way. Studies show that children with trisomy 21 which are more difficult to conduct three years progress more slowly in her school stage. This would be due largely to that you are not able to stay still, listen, and take advantage of learning opportunities. In addition, these little ones are characterized by having low level of perseverance and tend to dissociate from the tasks.
Thus, “depending on its evolution and other variables that typically escape our control, they are will be progressively proposed other alternatives for schooling, in the case that does not work initially indicated,” noted Isidoro Candel.