By Laura Cifra-Bean, MD
Editor’s note: Life can be so hectic and visits to doctor’s offices are often stressful, so I was tempted to start skipping the annual screening tests recommended in the Down Syndrome Health Care Guidelines. That won’t happen again. After eight years of normal blood and hearing screenings, a blood screen last March showed Maren had the first signs of hypothyroidism. In August, I was shocked to hear that although she had passed the hearing exam a year earlier and had not had any ear infections through the year, Maren had acquired a mild to moderate hearing loss. Now, a dose of Synthroid and the care (and keeping track!) of a pair of hot pink hearing aids are added to our daily routine.
Thanks to pediatrician, mom and NDSC board member Laura Cifra-Bean for this reminder about how important preventive medical care is.
All people benefit from preventive medical care for maintaining health and well being. This is especially true for people with Down syndrome. Medical researcher Leonard reported that from 1980 to 1996 the survival rate for infants with DS increased from below 50 percent to more than 90 percent. A different study from Yang showed that in 1983, the median age of death for a person with DS was 25 years, which increased to 49 years by 1997. The increased infant survival and longer life span is in large part due to better medical care including surgical correction of congenital heart disease, aggressive infection prevention and treatment, and screening and treatment of medical conditions commonly associated with DS.
Children and adults with DS should have yearly physical exams. All routine immunizations should be obtained including an annual flu shot. Infants born prematurely or with congenital heart disease are candidates for Synagis to protect against serious respiratory syncyitial virus (RSV) infection during the winter season.
DS is associated with many medical conditions. Some have few recognizable symptoms, but may affect daily functioning or long-term health, so regular screening tests should be done. Hearing and vision screening are very important. Laboratory studies for thyroid disease, celiac disease and blood abnormalities are recommended.
Fortunately, very good guidelines for preventive medical care are readily available. The DS Medical Interest Group (DSMIG) is a group of medical doctors who have a specific interest in DS. They created and regularly review and update health care guidelines that are available on the NDSC Web site, www.ndsccenter.org, under the new parent package section. The American Academy of Pediatrics also has guidelines that are available at www.aap.org. Information about adult health care is available at www.advocatehealth.com/adultdown, the Web site for the Adult DS Clinic at Advocate Lutheran General Hospital. Before the next doctor’s visit, download the guidelines to review them with the doctor. Good preventive medical care can make a big difference in the health and functioning of people with DS.