Top 5 News Posts for Down Syndrome in 2013 on DSD

Down Syndrome Daily's goal is to bring current news to the Down Syndrome community. These are the top 5 news items for 2013 based on DSD views.

John T Farley to serve as board member for the NDSC

 

Five years ago Farley began his run for the board of directors of the National Down Syndrome Congress. Each year the self advocates select one of their peers to represent them on the national board. Only one is voted in annually, and some years as many as 20 individuals run for this position.

 

Boy with Down syndrome, 6, left to die because of tired doctor's mix-up

 

A six-year-old boy with Down syndrome died after a hospital doctor mixed him up with another child who had a 'do not resuscitate' order.

Defending Kids with Down Syndrome: A Life Lesson on Vacation

 “We can not stay in this store,” I told him sharply. My son and my daughters, ages 5 and 7, were confused. “This store is making fun of people with Down syndrome,” I told them.

Down syndrome: Nutrient-dense foods are best

The best way to avoid unnecessary weight gain is to feed children nutrient-dense “real” foods and limit junk foods. As a rule of thumb, buy food that is grown rather than manufactured; so, plenty of fruit and vegetables. Since digestive issues are common in children with Down syndrome, a truly digestible diet can go a long way in preventing or treating yeast and/or constipation issues as soon as they appear.

World Down Syndrome Day Google Doodle

 

Mark Jones created a Google Doodle proposal for World Down Syndrome Day. Although it wasn't used by Google, it still generated a lot of global attention (it really did!).

Down Syndrome Daily is dedicated to supporting people with Down syndrome and we sincerely appreciate those who subscribe to our site and social media. We also thank everyone who sends articles and pictures!

Down syndrome: Nutrient-dense foods are best

from Daily Nation by Sona Parmar Mukherjee:
I seem to be seeing a lot of children since I reopened the clinic and yesterday, I saw a little girl with Down syndrome.

Down syndrome is a condition where a baby is born with an extra 21st chromosome. Most experts believe that this extra chromosome changes the normal development of the brain, which then leads to various mental and physical problems. It’s because of this that children like Juliet tend to be at a higher risk of certain health concerns.

The first is something that you probably wouldn’t have expected: children with Down syndrome are more likely to be overweight. They tend to burn calories at a slower rate and many are diagnosed with an under-active thyroid (which can further contribute to weight gain).

The best way to avoid unnecessary weight gain is to feed children nutrient-dense “real” foods and limit junk foods. As a rule of thumb, buy food that is grown rather than manufactured; so, plenty of fruit and vegetables. Since digestive issues are common in children with Down syndrome, a truly digestible diet can go a long way in preventing or treating yeast and/or constipation issues as soon as they appear.

Another common digestive issue is GERD or gastroesophageal reflux disease. Symptoms range from heartburn and sore throat, to regurgitation and chest pain. Common trigger foods include citrus fruits and foods high in sugars and fat (chips, biscuits, ice cream, fatty meat).

Children with Down syndrome are also more likely to suffer from a gluten intolerance or coeliac disease. Gluten is a protein found in wheat, barley, oats and rye, and an intolerance to it causes damage to the lining of the small intestine, which in turn affects absorption of vital nutrients.

For this reason, it’s best to wait until a child’s digestive system is more developed before introducing these foods, usually around 18-24 months. You may find keeping a food diary invaluable during this time. (Diarrhoea, stomach ache, bloating, irritability, rashes and mouth sores are possible symptoms.)

Gluten aside, some research in the US has shown that most children with Down syndrome are also lactose-intolerant, and do better on a milk-free diet. Dairy produce also increases the production of mucous, which can increase nasal congestion and the tendency to bronchial infections, both of which are more prevalent in children with this condition.

As I explained to Juliet’s parents, the idea is to create a good nutritional foundation. As Juliet grows and becomes more independent, she’ll have to be able make the right food choices on her own.

If you have an older child (Juliet is six years old), start slowly, making subtle changes to their diet. A total overhaul is likely to lead to resistance, whereas small, gradual changes will make it easier both on the child and the rest of the family.

Postscript: It is generally accepted that Down syndrome is a fait accompli, that little can be done to help the situation. It’s just a matter of accepting your child for who s/he is.

Enter the work of a small group of motivated parents and doctors in the US and Canada. They claim to have shown that if nutritional intervention is started early enough, growth rates and cognitive development could be normalised, and many of the physical and mental features of Down syndrome partially prevented or improved. If you would like more information on this, please do get in touch.

The writer is a clinical nutritionist and certified by the Nutritional Therapy Council in the UK. Please direct any questions about family nutrition to her on living@nutritionbysona.com

Foods for children with Down syndrome

By Jacqueline Silvestri Banks from Fox News:

In today’s three part series on diets for special needs, we will be taking a look at Down syndrome. Children with Down syndrome are at a higher risk than the general population for certain health concerns.
Eating nourishing foods can help reduce some of the physical symptoms and increase overall health. Brain physiology and common health symptoms will be covered first, followed by important foods to include in their diets and which foods to avoid and why.
Down syndrome is categorized as a condition in which a baby is born with an extra chromosome. According to the CDC the extra copy of chromosome, number 21, changes the brains normal development, causing mental and physical problems.
Information in the brain is transferred between neurons (synapses). Research has suggested that in Down syndrome the structure and function of the synapses are abnormal, causing cognitive defects.  It has been hypothesized that this abnormality is caused by one or more of the genes on the extra chromosome.
Reduced brain volume and smaller volumes in frontal and temporal lobes as well as the cerebellum also affect those with Down syndrome.
The American Academy of Pediatrics’ Committee on Genetics has noted that those with Down syndrome are likely to develop certain health problems. This is thought to happen as a result of body structures not developing normally.
Children with Down syndrome are likely to be overweight and have a higher risk of obesity. They burn calories at a slower rate and are frequently diagnosed with an under-active thyroid which can contribute to weight gain.
Gastroesophageal reflux disease (GERD) is common among children with Down syndrome.  Symptoms include heartburn, sore throat, regurgitation and chest pain.
Gluten intolerance and celiac disease is also widespread and can lead to nutrient deficiency and an impaired immune system if dietary needs are avoided.  
Finally, periodontal disease becomes prevalent in adulthood so it is important to establish habits to eat foods that will decrease its likelihood.
To keep obesity at bay, feed children nutrient dense foods and limit junk food without nutritional value. A good rule of thumb is to eat ‘real food’ found in nature, and avoid man-made ‘food’ as much as possible.
Include healthy fats such as coconut and olive oil and even organic, pastured, butter containing butyric acid and omega 3 fatty acids.
For an under-active thyroid, an excellent choice is iodine rich seaweed. Seaweed snack packs are great for lunch boxes and kids love the salty taste. It can be used in salads, sprinkled on other food or used as a wrapper for healthy snacks.
Foods rich in vitamin C may help keep periodontal disease at bay. Citrus fruits (for those not suffering from GERD), strawberries, green peppers and broccoli are great choices and make easy finger foods.
Anti-microbial foods such as garlic, onion, thyme, oregano, tarragon and cinnamon are great to use on a regular basis to help kill bacteria that lead to tartar and plaque buildup.
Trigger foods for GERD should be avoided. Common culprits are citrus fruits and foods high in sugars and fat including chips, brownies, cookies, creamy dressings, ice cream, fatty cuts of meat, fried chicken nuggets and french fries.
A food journal is a useful tool for tracking any symptoms; this will help pinpoint exactly which foods to avoid. It will also help track any correlation between gluten and symptoms of celiac disease (diarrhea, stomach aches, bloating, irritability, skin rashes and mouth sores). Carefully read all food labels since gluten can lurk in unsuspected places such as soy sauce and remember that ‘wheat free’ does not mean gluten free.
Because there is an especially high incidence of celiac disease among those with Down syndrome, I suggest avoiding the introduction of gluten containing foods until at least the age of 18-24 months when a child’s digestive system is more developed.
These guidelines will help create a great nutritional foundation. As children with Down syndrome grow and gain independence, they will have the right tools to make good choices on their own.
For older children with established eating habits, start by making small changes to their diet. Making a complete change overnight is likely to lead to resistance and fade quickly, but subtle changes over time will make it easier on the child and the rest of the family to adjust to new eating habits.

Nurse’s intervention helps obese child with Down syndrome

from Nurse.com by Lois Gerber, RN, BSN, MPH:

The nurse practitioner at the health department handed me a new referral. "Evan’s a healthy 6-year-old with Down syndrome," she said. "No cardiac problems. He’s short with a body mass index at the 90th percentile. Can you make a home visit?"

Two days later I was sitting in the family’s apartment talking with Leslie, Evan’s mother, a stocky middle-aged woman wearing khaki slacks and a white T-shirt.

Dressed in a navy sweatsuit, Evan sat in the corner of the room in an oversized children’s rocking chair watching Sesame Street on television. A box of Cheez-Its sat on the table beside him.

Piles of men and women’s clothes were stacked on top of a sewing machine by the back wall. "I alter people’s clothes," Leslie said. "I have to work. We need the extra money."

I smiled at her. "Let’s talk a bit."

"There’s nothing a nurse can help with," she said. "Evan’s doing OK. So what if he has a little baby fat?"

"He’s really not a baby anymore," I said.

Leslie swallowed hard. "You don’t know what it’s like. I’m here every afternoon with him. Mornings, too, when he doesn’t go to school." She sighed. "Evan sits watching television while I sew. He loves to rock and eat. I know it’s bad for him but … ." Tears filled her eyes.

I learned Leslie and her husband, Sam, felt overwhelmed with caring for their son even though they’d adjusted to the fact that he would always have developmental challenges. Sam worked long hours as a security guard and was emotionally detached from the family.

Although toilet trained, Evan had poor muscle tone and a lumbering gait and was prone to upper respiratory infections. His tongue protruded slightly. Developmentally, he functioned as a 3-year-old.

On another home visit, I said, "Obese children tend to have weight problems all their lives."

Leslie smoothed her T-shirt over her stomach. "What else can I do?"

"Let’s write down some ideas," I said. "You first — something you think could help."

"Not giving him Snickers bars after supper."

"Good idea," I said.

Together, we developed the care plan. She agreed to complete a three-day food diary, including snacks, which showed the family’s regular meals contained too much bread and dairy and not enough fruits and vegetables.

I tailored my teaching to the family’s food preferences and eating style. The goals were for Evan to maintain his present weight until it fell within the normal range for his age and to eat foods daily from each of the major food groups.

Leslie agreed to a referral for food stamps, allowing her to purchase more fresh fruits and vegetables. I taught her healthier food choices using pamphlets with heart-healthy recipes. She prepared more low-calorie, low-fat meals with fruits, vegetables and whole grains.

To encourage Evan’s physical activity, Leslie enrolled him in an afternoon playgroup for developmentally delayed children. On Saturdays, the family shopped for groceries together. The parents compared food labels and let Evan participate in the final selections. Leslie declined referrals to a nutritionist and the National Association for Down Syndrome, but agreed to save the phone numbers for future reference.

On my last visit, a smiling Evan met me at the door. Leslie had limited his television watching to two hours a day and replaced his candy and cookie snacks with granola bars or small dishes of dry cereal and raisins. Instead of buying milkshakes at fast food restaurants, she prepared them at home with skim milk and fruit juice.

"Sam and I are losing weight," Leslie said proudly. "We have more energy and feel more like a family now."

Nurses must be creative and look beyond the obvious to find long-term solutions to complex health problems. Referrals to community resources broaden the family’s base of support and increase the likelihood that care plan goals will be met and maintained.