Down Syndrome

Gavin
is walking and playing, just like other one-year-olds. But his
parents worry that won’t always be the case. His mother Jessica
Cook says, “With Down Syndrome you don’t know. You
don’t know what level they are going to go to. He could stay
age two the rest of his life.”

Scientists are studying the Alzheimer’s drug Aricept—to
see if it can help kids with Down Syndrome. Gavin’s dad Myles
Cook says, “Our goal for Gavin is for him to be a self reliant
human being, to make his own way in the world. And if it takes
a pill to do that, more power to him.”

Researchers at Duke University tracked seven kids who took Aricept
for six months. They say the children began using a larger vocabulary,
and more complex sentences. Dr. Leslie Rubin, a developmental pediatrician
in metro-Atlanta says, “This is very promising for children
with Down Syndrome, and we need to see a lot more before we will
be prescribing it routinely.”

The kids in the study had the average mental age of a four year
old. After taking the drug….the mental age increased by
seven months. Myles says, “At one step you want to rush out,
sign your kid up and say, ‘If this is going to help my son…Help
him! But you have to step back and go, ‘What are the risks?”

And that’s not the only question doctors can’t answer. “If
the medications stopped, will that gain be permanent?” asks
Dr. Rubin. “Or does the medication have to be continued in
order for them to sustain the gains, and if so will they make more
gains?”

Doctors say they need to do more studies, on a larger number
of kids. Myles Cook says, “We can’t not participate.
You can’t be afraid. I mean, I don’t want my child
used like a guinea pig where they are poked and prodded. But if
it’s a well-monitored, well-placed controlled study…absolutely.”

Researchers are also testing the Alzheimer’s drug Exelon
to see if that too, can help children with Down Syndrome.

Individuals with Down syndrome have a chromosomal anomaly that
leads to the characteristics associated with the syndrome. The variance
in the chromosome development usually arises in one of three ways – through
non-disjunction (most common), mosaicism or translocation. It can affect
people of all ages and races and occurs once every 800 to 1,000 births.
There are many myths concerning Down syndrome, and experts at the National
Down Syndrome Society have developed a list of truths to go along with
some of the more common ones:

• Myth: Down syndrome is a rare genetic disorder.
  Truth: Down syndrome
  is the most commonly occurring genetic condition. One in every 800
  to 1,000 live births is a child with Down syndrome, representing
  approximately 5,000 births per year in the United States alone. Today,
  Down syndrome affects more than 350,000 people in the United States.
• Myth: Most children with Down syndrome are born to older parents.
  
  Truth: Eighty percent of children born with Down syndrome are born
  to women younger than 35. However, the incidence of births of children
  with Down syndrome increases with the age of the mother.
• Myth: People with Down syndrome are severely retarded.
  Truth: Most people with Down syndrome have IQs that fall in the mild to
  moderate range of retardation. Children with Down syndrome are definitely
  educable and educators and researchers are still discovering the full
  educational potential of people with Down syndrome.
• Myth: Most people with Down syndrome are institutionalized.
  Truth: Today people with Down syndrome live at home with their families
  and are active participants in the educational, vocational, social
  and recreational activities of the community. They are integrated into
  the regular education system and take part in sports, camping, music,
  art programs and all the other activities of their communities. In
  addition, they are socializing with people with and without disabilities,
  and as adults are obtaining employment and living in group homes and
  other independent housing arrangements.
• Myth: Parents will not find community support in bringing up their
  child with Down syndrome.
  Truth: In almost every community of the
  United States there are parent support groups and other community
  organizations directly involved in providing services to families
  of individuals with Down syndrome.
• Myth: Children with Down syndrome must be placed in segregated
  special education programs.
  Truth: Children with Down syndrome have
  been included in regular academic classrooms in schools across the
  country. In some instances they are integrated into specific courses,
  while in other situations students are fully included in the regular
  classroom for all subjects. The degree of mainstreaming is based
  in the abilities of the individual; but the trend is for full inclusion
  in the social and educational life of the community.
• Myth: Adults with Down syndrome are unemployable.
  Truth: Businesses
  are seeking young adults with Down syndrome for a variety of positions.
  They are being employed in small- and medium-sized offices by banks,
  corporations, nursing homes, hotels and restaurants. They work in
  the music and entertainment industry, in clerical positions and in
  the computer industry. People with Down syndrome bring to their jobs
  enthusiasm, reliability and dedication.
• Myth: People with Down syndrome are always happy.
  Truth: People
  with Down syndrome have feelings just like everyone else in the population.
  They respond to positive expressions of friendship and they are hurt
  and upset by inconsiderate behavior.
• Myth: Adults with Down syndrome are unable to form close interpersonal
  relationships leading to marriage.
  Truth: People with Down syndrome
  date, socialize and form ongoing relationships. Some are beginning
  to marry. Women with Down syndrome can and do have children, but
  there is a 50 percent chance that their child will have Down syndrome.
  Men with Down syndrome are believed to be sterile, with only one
  documented instance of a male with Down syndrome who has fathered
  a child.
• Myth: Down syndrome can never be cured.
  Truth: Research on Down
  syndrome is making great strides in identifying the genes on chromosome
  21 that cause the characteristics of Down syndrome. Scientists now
  feel strongly that it will be possible to improve, correct or prevent
  many of the problems associated with Down syndrome in the future.

Many questions may swirl through the minds of parents
who have just given birth to a baby with Down syndrome or who are expecting
one. That is a natural reaction, and it is important to find the best
ways to care for your son or daughter. Experts at the American Academy
of Family Physicians have created a list of common questions and answers
for parents:

• How will I take care of my baby with Down
  syndrome? Just like
  any other newborn, your baby will need to be fed, dressed, diapered,
  cuddled, held, talked to, played with and loved. However, your baby
  will probably have some health problems that will require some extra
  care.
• What are the health problems that might
  affect my baby? Most
  babies with Down syndrome don’t have good muscle tone. This makes
  it harder for them to learn to roll over, to sit up and to walk.
  Physical therapy can help with these problems. There’s a chance
  that your baby may have some kind of heart defect – a little
  less than half of these babies have a heart problem. An ultrasound
  exam of your baby’s heart will show if there’s a problem. Surgery
  can fix the heart problems of babies with Down syndrome. Some babies
  with Down syndrome have problems swallowing, or they may have blockages
  in their stomach or intestines (bowels). Surgery can fix these
  problems as well. Once they are fixed, they usually cause no further
  harm. Some babies have eye problems, like cataracts (cloudy lenses)
  or crossed eyes. Surgery can help these problems, too. Children
  with Down syndrome may have colds, ear infections and sinus infections
  more often than other children. They are more likely to have thyroid
  problems, hearing loss, seizures and bone and joint problems. It’s
  also common for these children to be late in teething.
• Will my child have learning problems? Intelligence ranges from
  low normal to very retarded (slow to learn) in people with Down
  syndrome. If you can keep your child physically healthy, he/she
  will be better able to learn. At birth, it isn’t possible to tell
  yet how smart a baby with Down syndrome will be. Many adults with
  Down syndrome have jobs and live independently.
• What other special care will my baby need? You may need to give
  your baby medicine for a heart defect or some other medical problem.
  Your doctor will probably want to check your baby more often to
  be sure he or she is growing well and isn’t developing problems
  from birth defects. Your baby may need to have physical therapy
  every week to help with building up muscle tone and coordination.
  Later on, speech therapy and occupational therapy (to help with
  hand coordination) may be helpful for your child.