DSI Family Picnic

Please join us, Sunday July 14^th from 11am to 2pm at Independence Park of Johnson County (2100 S. Morgantown Road, Greenwood, IN 46143) for the Down Syndrome Indiana Summer Picnic! It will be a fun-filled afternoon with our beautiful families featuring delicious gluten-free food, face painting, and a new sensory playground!  Please RSVP online, or by sending an email to register@dsindiana.org if you and your loved ones plan to attend.
 

This event is provided with no cost to our families, though we do accept donations of office supplies.  US postage stamps and white copy paper are greatly appreciated.

Self Advocate Outing on June 4th

DSI  will be hosting a Self Advocate Activity on Tuesday, June 4th at 3:00PM.  Attendees will experience rhythm and percussion, explore a wide variety of percussion instruments and artifacts from around the world through interactive exhibits and  multimedia experiences. Learn about rhythm, rock out on a drum set, play symphonic percussion and more! DSI covers the cost of a Self Advocate and their caregiver (if applicable). The Rhythm! Discovery Center is located at: 110 W Washington Street, Indianapolis, IN (On the lower level of Claypool Court at the intersection of Illinois and Washington Street)

 

For more information, please call 317-925-7617 or e-mail lisa@dsindiana.org.

Ask the Expert

Q: What is the risk for heart disease in adults with Down syndrome who do not have congenital heart problems (i.e., birth defects of the heart) and, specifically, atherosclerosis (hardening of the arteries)?

A: Adult patients having Down syndrome but no evidence of congenital heart disease are at the same risk for eventual development of atherosclerotic cardiovascular disease (coronary artery disease, stroke, peripheral artery disease, and aortic aneurysms) as compared to individuals who do not have Down syndrome.  Risk factors for the development of coronary artery disease and stroke include: 

 

(1) family history of early heard attacks or strokes,

(2) hyperlipidemia,

(3) hypertension,

(4) smoking,

(5) diabetes,

(6) obesity, and

(7) sedentary life style. 

 

The American Academy of Pediatrics (Pediatrics, July, 2008, Vol 122, No 1: 198-208) recommends a screening fasting lipid panel in all children by age 10 years, and as early as 2 years of age if there is a positive family of early atherosclerotic disease.  Atherosclerosis is a nutritional disease of childhood and decreasing the incidence of coronary artery disease in mid- and late-life necessitates establishing healthy habits in nutrition and lifestyle early in life.  (Berenson, et al; “Atherosclerosis: A Nutritional Disease of Childhood”, American Journal of Cardiology, 1998; 82:22T-29T)  The Muscatine, Iowa Study (Clarke, et al; “Changes in ponderosity and blood pressure in childhood: the Muscatine Study”; American Journal of Epidemiology, 1986; Vol 124, No 2, 124:195-206) confirmed that obese children have more significant hypertension and hyperlipidemia.  Longitudinal studies indicate that obesity acquired in childhood is predictive of worsened adult obesity and the development of coronary artery disease.  If children become overweight before age 8 years, obesity in adulthood is likely to be more severe.  Overweight children and adolescents may experience other health conditions associated with increased weight, which include asthma, liver damage, sleep apnea, and type 2 diabetes.  Obesity also puts children at long-term higher risk for other debilitating chronic conditions such as stroke; breast, colon, and kidney cancer; musculoskeletal disorders; and gall bladder disease.  The fundamental cause of obesity is a greater imbalance between energy intake (overeating) and energy expenditure (lack of exercise).
 

We must, therefore, encourage our children with Down syndrome to exercise more and decrease caloric intake to avoid obesity as a cause of developing atherosclerotic heart disease.  We need to treat the development of hypertension or hyperlipidemia aggressively.  If these patients develop insulin insensitivity (type 2 diabetes), this also needs to be aggressively managed.  A significant number of patients with Down syndrome may also have low thyroid levels (hypothyroidism) which may accentuate their tiring easily and obesity.  Blood tests are indicated to make certain that thyroid function in maintained normal.

 

Randall L. Caldwell, M.D.

Ask the Expert: Body Mass Index

Q: We just had my son’s 4-year old check-up and his BMI is above the 95%ile. What does BMI mean and what can we do to help him with his weight?

A: BMI stands for Body Mass Index. It is a number that shows body weight adjusted for height. Children’s body proportions change as they mature, so BMI for children is gender and age-specific. Children with BMI at the 85-95 percentile are considered at risk for overweight or obesity, while children at or above the 95 percentile (heavier body proportions than 95% of kids the same age and gender) are considered overweight. Children and adults with DS are at higher risk of obesity, but there are many things you can do to help. If your child currently drinks whole or 2% milk, change to skim milk. Encourage your child to drink water when thirsty, rather than juice, soda or sweetened fruit drinks. Limit fast food – it tends to be high in fat & calories. Encourage healthy snacks, like fresh fruits and vegetables, or fat free yogurt, and limit the amount of “junk food” in the house. Model healthy eating behavior yourself. Limit TV watching and encourage opportunities for physical activity. Finally, although you may be tempted to put your little guy on a “diet” – don’t do it! Offer healthy food choices at regular meals and snack times. Let him eat what he wants. Limiting portions other than dessert or intake tends to backfire and kids will often overeat later when they get the chance.

Maria Stanley, M.D.
Ann Whitehill Down Syndrome Program
Riley Hospital for Children
Assistant Professor of Clinical Pediatrics
Indiana University School of Medicine

Aging and Down syndrome: A Health & Well Being Guidebook

The National Down Syndrome Society announced the release of its new publication, Aging and Down Syndrome: A Health & Well-Being Guidebook, available online and in print - free of charge. This groundbreaking resource for families and caregivers of adults with Down syndrome covers medical issues commonly encountered in adulthood, as well as how to provide person-centered care. The goal for this guidebook is to provide guidance, education and support to families and caregivers of older adults with Down syndrome, and to prepare them for medical issues commonly encountered in adulthood.

Free Tennis Lessons for All Ages

Mark your calendars! Free Park Tudor All Ages Tennis Lessons begin Sunday, April

14^th. Lessons will be held from 4pm to 5pm at the Park Tudor Tennis Courts. The last

day of lessons will be May 26^th. A huge thank you to the Park Tudor Boys Varsity

Tennis Team for their continuing support of Down syndrome Indiana!

 

The Park Tudor Tennis Courts are located at: 7200 N College Ave Indianapolis, IN

46240.

 

For more information, please contact: Lisa Wells, DSI Executive Director at lisa@dsindiana.org or call 317-925-7617.

 

Ask the Expert: Ligament Laxity

Q:  My daughter (with Down syndrome) signed up for Special Olympics and we were told she needs an x-ray of her neck. Why does she need this?

 

A:  As you may be aware, children with Down syndrome have problems with ligament laxity (looseness) and this can occur in the cervical spine (neck), especially at the occiput (back of the head) - C1 vertebra (occipital-atlanto) and C1-C2 vertebrae (atlantoaxial) levels.  Cervical spine x-rays can help determine whether there is ligament laxity and/or instability at these levels of the neck.  If there is evidence of instability of the cervical vertebrae, the child may be at risk for catastrophic neurologic damage with even mild cervical spine injury.  Consequently, they should not participate (and will not be allowed to participate) in Special Olympics. In addition, they may require surgical treatment of their instability (i.e., cervical spine instrumentation and fusion), which we do here at Riley.

 

Jodi L. Smith, Ph.D., M.D.

Pediatric Neurosurgery

Riley Hospital for Children

Assistant Professor of Surgery

Indiana University School of Medicine