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In the beginning it is a good idea to suggest to your primary health care provider that perhaps along with the usual height and weight examination performed at each visit that a base line study be performed in the beginning to screen for lead poisoning, anemia, and thyroid function. Also to regularly check vision and hearing since the ears and eyes have slower than normal development.

A child who has Down syndrome does not necessarily require an increase in medical care but there are some things a parent and practitioner team need to be on the look out for. For example an undetected congenital heart disease has the potential to be a life threatening challenge.

Children who have Down syndrome almost all have speech delays however if you notice a severe problem with language development skills then perhaps it may be an excellent idea to follow up on a visit to the ear clinic.

Make a plan with your primary care provider to offer all of the usual inoculations that are offered to your other children. Parents have a right to know what it is that the shots are for and if there are any potential side effects.

The American Academy of Pediatrics offers a recommended set of guidelines for proper preventive immunizations offered for prevention. Check also to see what are the most recent screening tests that are being suggested and ask whether or not it is a good idea for your child to participate.

The typical case of a newborn with Down syndrome is that they are otherwise healthy. The exceptions are as follows. There is a 50% chance that a baby born with Down syndrome will also have some form of a congenital heart defect.

“One in every ten babies who have Down syndrome is born with a defect in his or her intestinal tract which may cause obstruction. This may occur in any art from the esophagus to the rectum, but the most common blockage is called duodenal atresia and this occurs in the small intestine just beyond the stomach. Babies with this sort of problem will not be able to keep down their food. Shortly after they are born, they will begin to vomit everything that they are fed. Most of these problems can be surgically repaired.”

Don’t overlook the need for good, regular dental care. Cavity prevention is the primary approach to good oral hygiene.

It is a good idea to make an appointment years ahead with a good orthodontist who specializes in or has treated a significant number of orthodontics for children with Down syndrome. It is important to note that since so many children who have congenital heart defects should always obtain a clearance from your cardiologist before embarking on a course of dental treatment to ascertain whether or not your child will need an antibiotic prior to the appointment.

“Finally, families need information. They need to have up to date information about Down syndrome in a format that is easy to read and understand. They need information about their rights and about the services to which they are entitled. They need information about becoming capable advocates for their child and information about where to get more information.”

Excerpted from the Book, “Medical and Surgical Care for Children with Down Syndrome: A Guide for Parents” by W. Carl Cooley, MD

References:

Cohen, WI et al, Down syndrome Preventive Medical Check List, 1992

Cooley, W C, see above

Pueschel, S M and Pueschel, JK Biomedical Concerns in the Person with Down Syndrome, Brooks, 1992

Rubin, IL and Crocker, AC Developmental Disabilities-Delivery of Medical Care for Children and Adults (Philadelphia: Lea and Febiger, 1989)

Wells E, et al, Paying the Bills: Tips for Families on Financing Health Care for Children with Special Needs (Boston: New England SERVE 1992)