Down Syndrome Parent Guide

Down syndrome is a lifelong condition that a child is born with. People with Down syndrome have an extra chromosome. These children have lifelong medical and learning problems.

Children with Down syndrome need regular health care visits .For a parent bringing up a child with Down syndrome is a challenging task. Following are the areas that parents of Down syndrome need to look into for a good & healthy upbringing of their child.

Growth:

Babies with Down syndrome are usually smaller than other babies, they also grow more slowly. Though they have smaller stature they tend to gain more weight. Parents need to guard against obesity by encouraging exercise and limiting calorie rich food.

These children should have growth monitored at regular intervals of 2,4,6,9 12, 15, 18 and 24 months and then once a year till adulthood.

Immunisation:

These children have weak immunity and to prevent certain preventable disease all vaccine should be taken as per advice and schedule. This includes flu vaccine on yearly basis.

Heart:

Get your child Examined for heart problems and if detected regular ECHO and check up is mandatory. About half of these children are born with heart defects. Some of these defects are repairable

Hormones:

Low Thyroid hormones can be present in a child with Down syndrome. TSH testing at birth, 6 month, 12 month and then yearly should be done and if required hormone replacement therapy should be initiated.

Some children may develop Type I Diabetes. Insulin therapy can control symptoms and complications.

Hearing:

Hearing can be affected and should be checked at birth, 6 month of age and then every year.

Nearly 80 percent of children have some degree of hearing problem and may require hearing aids.

Vision:

Most children may have vision problem such as nearsightedness, farsightedness or astigmatism. Regular eye check up is essential.

Developmental:

Almost all babies born with Down syndrome are intellectually disabled, but the degree of impairment can vary. Utilize developmental services. Early interventions Programme are helpful.

Neck stability:

Some children with Down syndrome can have problem with bones of Spine and neck. Daily exercise is important. Do take your Child to a doctor if any of these problems are there

1. Stiff or sore neck.
2. Change in stool / urination pattern
3. Change in walking
4. change in use of arms and leg
5. Head tilt
6. Numbness in arms or leg.

Sleep Problem:

Children with Down syndrome may have sleep problems at night especially with low muscle tone, get a sleep study at age of 4 year.

Infections

These children have low immunity and may develop recurrent infection Persistent fever, or any other symptoms seek medical advice so early treatment can be started.

Fertility in a girl child

Teach your girl child about bad and good touch also about menstrual hygiene. Girls with Down syndrome can get pregnant. Educate your child about sex.

Diet and Vitamins and Obesity prevention

Intervention beginning at 24 months of age should include attention to diet and Physical activity calorie intake should be less that recommended for age. Calcium and vitamin D intake should be monitored

Counselling:

Though the incidence of recurrence of Down syndrome in next pregnancy is low .Recurrence risk Counselling should be done by a Genetic specialist.

By doing regular health check up and intervening at appropriate time a parent of a child with Down syndrome can manage and help appropriate growth, mental and physical health of their child.