CHOC Expert Discusses Support Services For Down Syndrome Patients

Ira T. Lott, M.D. is a Pediatric Neurologist at CHOC Children’s. His research has focused on the many aspects of Down syndrome, most recently on the relationship between aging and development. Dr. Lott serves as Chairman of the Scientific Advisory Board of the National Down Syndrome Society in New York.

Down syndrome is a genetic condition that occurs in one in every 691 births, according to the National Down Syndrome Society (NDSS). The NDSS asserts that individuals with Down syndrome learn and develop at their own rate and in their own way, just like all people.  However, they face medical challenges that can include heart defects, digestive diseases, as well as skin, hormone and vision problems. These unique health care and developmental concerns often require integrated services from a multitude of health care, social and educational services.

To address these concerns, Dr. Lott recommends a child with Down syndrome undergo a general evaluation to determine their specific needs. Then, a bridge must be created between the primary care physician and the specialty care providers. Collaboration within the various providers is needed to ensure the patients reach their potential as they join community life and go through school. The following support services are recommended to ensure a Down syndrome child’s needs are being met:

• Comprehensive medical assessment, from birth to age 18, including continued follow-up care coordinated with between the providers and the patient’s family
• Referrals, as required, to other sub-specialists and ancillary services as identified by the primary care physician and specialists
• Supplementary medical care and case management services should complement primary care physician efforts

Although people with Down syndrome experience cognitive delays, the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. Children with Down syndrome learn to do most activities a child without the condition would, only somewhat later.

“I find children with Down syndrome a joy to work with – they are very social and have a positive effect on the healthcare provider,” says Dr. Lott. “Many do great in the Special Olympics and even become big T.V. stars.”

For more information please visit the National Down Syndrome Society at www.ndss.org.

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Celebrate Down Syndrome Awarenes Month

October is National Down Syndrome Awareness Month, a great time to learn about this condition and celebrate the achievements and abilities of people with Down syndrome!

The Centers for Disease Control and Prevention (CDC) estimates that each year about 6,000 babies in the United States are born with Down syndrome – that’s about 1 of every 691 babies born in the United States each year is born with Down syndrome.

In many cases, educational programs, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead happy, fulfilling lives.

So what is Down syndrome? It is one of the most common genetic disorders. Normally a baby is born with 46 chromosomes. Babies born with Down syndrome have an extra copy of one of these chromosomes. This extra copy changes the body’s and brain’s normal development and causes mental and physical problems for the baby.

Even though people with Down syndrome might have some physical and mental features in common, symptoms of Down syndrome can range from mild to severe. Some common physical problems associated with Down syndrome include:

  •  A heart birth defect
  • Stomach problems, such as a blocked small intestine
  • Celiac disease, a digestive disease that damages the small intestine
  • Problems with memory, concentration and judgment
  • Hearing problems
  • Eye problems, such as cataracts or trouble seeing objects that are close
  • Thyroid problems
  • Skeletal problems

The name “”Down syndrome” comes from the physician, Dr. Langdon Down, who first described the collection of findings in 1866. It was not until 1959 that the cause of Down syndrome (the presence of an extra #21 chromosome) was identified.

There are many ways to commemorate Down Syndrome Awareness Month, including organizing an event, donating books about Down Syndrome to your local school, or simply sharing with your kids and family what you’ve learned today!

To learn more about Down Syndrome, please visit CHOC’s medical library at: http://www.choc.org/healthlibrary/topic.cfm?PageID=P02356

To learn about CHOC Children’s Down Syndrome Program, please click here:
http://www.choc.org/publications/articles.cfm?id=P00303&pub=KH&aid=536

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October is National Down Syndrome Awareness Month

At CHOC Children’s, there are hundreds of stories of the beautiful and courageous children with Down Syndrome that touch our lives every day.

There are many ways to commemorate National Down Syndrome Awareness Month, including sharing your own story of a loved one who has this condition and the special role they’ve played in your life. You can also organize an event, donate books about Down Syndrome to your local school, or learn more about Down Syndrome and share it with others.

To learn more about CHOC’s Down Syndrome program, helping to meet this patient population’s wide range of needs through comprehensive specialty care, please click here: http://www.choc.org/publications/articles.cfm?id=P00303&pub=KH&aid=536

New CHOC Program Provides Comprehensive Care for Children with Down Syndrome

CHOC Children’s is excited to announce the recent launch of the CHOC Children’s Down Syndrome Program—An Alliance with the Down Syndrome Association of Orange County. The new program will focus on diagnosing and treating the complex medical aspects of Down syndrome, and provide patients with comprehensive, coordinated specialty care.

The program was created to help fill an unmet need for coordinated medical care in this high-risk population. According to Lanny Hardy, executive director of the Down Syndrome Association of Orange County, until now, there hasn’t been a medical program in Orange County that focuses entirely on the serious medical conditions in children with Down syndrome.

The clinic is located at CHOC Children’s Neurology Center at 1120 W. La Veta, Suite 125, located across the street from CHOC’s main hospital building. For more information, please call 714-512-3609 or email downsyndrome@choc.org.