[tri-med] Hospital Def'n for Down Syndrome, coming and going
- From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
- To: tri med lists <tri-med@xxxxxxxxxxxxx>
- Date: Wed, 20 Feb 2008 22:27:41 +0000
Here is the hospital's def'n for Down Syndrome. My opinion is that it is quite
negative and I would feel that giving birth to such a child would be be a
detriment to himself and society.
Some people complained about it, and it was removed. Then, a week later it was
back again, unchanged. Just today, it is removed.
I see a big difference between this definition and the one provided by other
world class inst in the US.
Does anyone have an opinion?
What is Down syndrome?
Down Syndrome Karyotype
People with Down syndrome have an extra copy of chromosome 21.
Down syndrome is a genetic disorder. Most people have a total of 46
chromosomes. Most children with Down syndrome have a total
of 47 chromosomes. Down syndrome results from this extra genetic
material. Scientists are still learning about what causes
this extra genetic material and exactly how it causes the problems of
Down syndrome.
Down syndrome is the most common disorder of human chromosomes. It is
usually diagnosed shortly after birth during a baby's
first physical exam.
How is it diagnosed?
The
diagnosis is usually based on physical features. Eyes often have a
slant to the openings and extra skin at the middle corner. The mouth
tends to stay open with the tongue sticking out. Muscle tone is usually
low, making the arms and legs more relaxed. How will your child grow and
develop?
Growth and development is unique to every child. Children learn to walk,
run, use their hands and eyes, understand language,
speak, think, and solve problems at different rates. Children with
Down syndrome do all of these things too. However, children
with Down syndrome generally grow more slowly, learn more slowly, and
have more trouble with reasoning and judgment than other
children. They often have a short attention span. They are very
impatient and get frustrated and angry.
Children with Down syndrome generally should not be compared in their
development with other children. Growth and developmental
milestones unique to children with Down syndrome have been developed
and are available.
As your child reaches adolescence, she will become more aware of her
limitations. Emotional problems sometimes occur at this
age. They also may not know how to control sexual impulses.
Emotional problems often include being:
angry toward herself and others for the things she cannot do or
accomplish compared to others around them
rude or making out of place comments (things we might all think of
but know to keep to ourselves)
sad or feeling hopeless over limitations
agitated and scared by tasks which are difficult for them
Doctors believe that a child's emotional health is best supported by
staying involved in mainstream home, school, and community
activities as much as possible.
How do you care for your child?
Children with Down syndrome
can have many health problems. Some have a heart problem at birth or
later in life. As your child grows older, she may have vision, hearing,
bone, joint, hormone, or dental problems. Because of these problems, a
child with Down syndrome needs more medical and dental care and educational
help to reach her full potential.
Feeding
Breastfeeding a baby with Down syndrome is usually successful
and improves the infant's ability to fight infection.
Children with Down syndrome tend to have a small mouth and
smooth, flat tongue. This may cause spilling of liquids out of
the side of the mouth. This problem usually goes away during
infancy as tongue control improves.
Make
sure your baby is fully awake before feeding. Place pillows underneath
the baby during the feeding. Using a hand to support your child's chin
and throat can sometimes help during feeding. Talk to your doctor if
you have additional questions.
Heart evaluation
Because many children with Down syndrome
are born with heart defects, your child should be checked by a
paediatric cardiologist soon after birth. A test called an
echocardiogram, which uses sound waves to create a picture of the
heart, is recommended.
Thyroid screening
Babies are tested in the hospital shortly after birth for low
thyroid hormone levels. This is usually one of several tests
known as the "newborn screen." Children with Down syndrome
sometimes have low thyroid hormone levels.
Thyroid screening tests should be repeated for children with
Down syndrome at 6 months, 12 months, and then each year after
that.
Hearing
Many children with Down syndrome
have hearing problems. Often this is due to frequent ear infections or
fluid in the middle ear. There may be other reasons for poor hearing.
Hearing problems may come and go or be always present. Any cause of
hearing loss should be treated by your doctor to maintain good hearing
and allow better language development.
Vision
7 of every 10 children with Down syndrome will need glasses.
Around 20% of children with Down syndrome have a squint. A squint
is when the eyes are pointing in slightly different
directions. This needs to be treated. Most children with Down syndrome
need to see an eye doctor at about one year of age.
Dental and oral concerns
The teeth of a child with Down syndrome usually come in later
than the teeth of most children. The first tooth usually appears
between 12 and 48 months. Fifty percent of children with Down
syndrome are missing one tooth or more.
Teeth often will not be in the best position for chewing. For
example, a child may have an overbite (the upper teeth coming
out forward) or a crossbite (the lower teeth set to one side
of the upper teeth).
For an unknown reason, cavities are less common. Careful
brushing and flossing is needed to prevent cavities and gum disease.
Gum disease is more common in children with Down syndrome.
Children with congenital heart defects who are going to have
dental procedures performed often need antibiotic medicine before
the procedure.
Breathing and sleep apnea concerns
Air
passages in the nose, mouth, and chest are smaller than in other
children. As a result of the narrowing, a number of problems can occur.
Mouth breathing may develop and this can lead to teeth problems.
Snoring may be a sign of a narrowed airway. Narrowing may become so
severe that the airway becomes blocked, causing air flow to stop. This
problem is known as sleep apnea.
Check with your doctor if your child snores a lot, especially if
she has loud snoring, followed by silence, a snort, partial
awakening, and then snore again.
Cervical (neck) spine x-ray
Between the ages of 3 and 5 years, all children with Down syndrome
should have x-rays of the upper spine. The x-rays are taken to look for
too much movement of the bones in the upper spine when the neck is held
in different positions. If a child has too much movement, the problem
is called "atlanto-axial instability."
Dislocation,
or slippage, of these bones in the upper spine is not common but can
result in serious injury. Usually, before an injury, the child would
have several weeks of symptoms such as: neck pain, head tilt, breathing
changes, weakness, or changes in walking ability. If your child has
these symptoms, tell your doctor so the spine can be checked. A careful
neck exam is important before your child participates in sports.
Behaviour
Ignore outbursts unless your child becomes destructive. Then use
time outs or mild physical restraint until she is calm. Reward
your child for times when outbursts don't occur.
Sexuality
Teach your child to not stare at others of the opposite sex,
make sexual comments, or touch their genitals in public.
Emotional health
Help your child deal with her frustration with her limitations.
Suggest other activities which she can do. Behavioural training
programs may help your child learn how to respond calmly and
appropriately.
Social development
Children with Down syndrome tend to become dependent on others
and will need training to encourage independence.
Unproved therapies
You will probably hear of many treatments for children with Down
syndrome.
They may range from megavitamin therapy to facial surgery. The good
effects of many of these treatments are unproven and some may be
harmful. Check with your child's doctor before trying any treatment.
What kind of treatment and therapy will your child need?
Early
intervention services are a variety of therapies that parents and
professionals do together to help a child reach her greatest potential.
The therapies, along with improved medical care, parent education, and
increased social acceptance, may explain why people with Down syndrome
generally having better skills and higher levels of functioning than in past
decades.
The professionals who can provide with early intervention services:
Developmental paediatrician: evaluates and treats medical factors
affecting development.
Infant educator: helps with thinking and problem solving skills.
Paediatric physical therapist: helps with body movement skills.
Paediatric occupational therapist: helps with feeding and hand
skills.
Speech and language therapist: helps with communication skills.
Mental health professional: provides counseling and emotional
support.
Often
mental health specialists can help design behavioural training
programs. They can also help caregivers learn training methods. For
emotional and behavioral problems, psychiatric medicines may help
control moods and inappropriate behaviour. What is the outlook?
The health care needs of children with Down syndrome are better
understood than ever before. Scientists are improving their
understanding of the genetic basis of the syndrome. Much can be done
to prevent and treat medical problems associated with
the syndrome.
Although children with Down syndrome
may be slow in their achievements and must overcome the attitudes of
others, most lead productive, fulfilling lives. You can help your child
reach her potential by making sure your child has regular checkups and
receives proper medical treatment.
Additional information about Down syndrome is available from many books,
on-line services, and parent and professional organizations.
SYNDROME
A collection of signs and symptoms
that generally stem from a single cause and that together point to a diagnosis.
CHROMOSOMES
Long
lengths of coiled DNA that contain genes; each human cell contains 23
matching pairs of chromosomes for a total of 46 chromosomes.
DOWN SYNDROME
Also known as ?trisomy 21,? this
is a chromosomal abnormality where there is an extra copy of chromosome 21.
Children with Down syndrome
are born with varying degrees of mental retardation. These children
tend to have eyelids that slant upwards, small folds of skin at the
corners of the eyes, and slightly flat noses.
INFANCY
The period from one to 12 months
of age.
THYROID
The
butterfly-shaped gland in the lower neck that makes thyroid hormones.
The thyroid hormones are chemicals controlling many important processes
in the body that produce energy. For example, thyroid hormones control
how our bodies use oxygen, and break down carbohydrates and cholesterol from
food. They also affect our growth and thinking.
CONGENITAL
Present at birth.
ANTIBIOTIC
A medication that prevents or
cures bacterial infection. An antibiotic interferes with the growth of bacteria.
PAEDIATRICIAN
A
medical doctor who specializes in the development of children and the
diagnosis and treatment of diseases affecting children. Some
paediatricians specialize in specific types of diseases and disorders.
Others may be available to act as a regular doctor for well baby
visits, physicals, immunizations and general health concerns.
INFANT
A baby who is one to 12 months of
age.
OCCUPATIONAL THERAPIST
An
occupational therapist (OT) works with children and their families to
help a child develop occupational skills. A child's main occupational
skills are play, self-care and going to school. The occupational
therapist assesses a child's development, function and skills and
develops a treatment plan to improve these skills as necessary. With
infants and babies, an OT will assess and help with feeding, movement
and cognitive skills.
Last Reviewed
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- Follow-Ups:
- [tri-med] Re: Hospital Def'n for Down Syndrome, coming and going
- From: Catherine Trewin
- References:
- [tri-med] Re: The Hospital Tells the Truth
- From: Catherine Trewin
- [tri-med] Re: The Hospital Tells the Truth
- From: Karen
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