Archive for the ‘Medical’ Category

From Down Syndrome World Issue 3 of 4

Research shows that more than 50 percent of children with down syndrome who are referred for a swallow study are identified with swallowing problems, also known as dysphagia.

Since dysphagia can impact growth, nutrition, lung health, and participation in regular mealtime experiences, it is important for parents of children with down syndrome to know the potential signs of dysphagia and where to get help if a problem is suspected.

WHAT IS DYSPHAGIA?
Dysphagia can include difficulties in any of the three phases of swallowing:

• The oral phase, when the food/liquid is chewed and/or manipulated in the mouth to make it ready to swallow. Oral phase difficulties can include problems with extracting liquid from a breast, bottle, or cup, chewing, or controlling food/liquid in the mouth.
• The pharyngeal phase, when the food/liquid passes through the throat. Pharyngeal phase difficulties may include delay in starting the swallowing reflex, poor timing of closing off the airway before or during the swallow, and having residual material left in the throat after the swallow. These problems can lead to aspiration or entry of food/liquid into the airway.
• The esophageal phase, when the food/liquid passes from the throat through the esophagus to the stomach. Esophageal difficulties may include food/liquid moving slowly through the esophagus or getting stuck.

 

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Signs of dysphagia may include coughing, choking, having red/watering eyes, or sounding congested during or after feeding. Swallowing problems can also be silent, with no obvious signs or symptoms. In children who have frequent upper respiratory illnesses, pneumonia, or persistent oxygen requirement, doctors may suggest having swallowing evaluated, even if there are no clear signs of a problem.

HOW IS DYSPHAGIA DIAGNOSED?
If the child appears to be having problems only in the oral phase of the swallow, a feeding evaluation, during which a child’s feeding skills are observed by a specialist or team of specialists, may be recommended.

If compromised airway protection is suspected, the child’s doctor may order an imaging study. The two most common imaging studies used to diagnose swallowing problems are the videofluoroscopic swallow study (VFSS) and the fiberoptic endoscopic evaluation of swallowing (FEES). The VFSS is done in the radiology department and looks like a “moving X-ray” of the head and neck.

The FEES is typically conducted in the office of an ear, nose, and throat doctor, also known as an otolaryngologist. During the FEES, a small, flexible tube called an endoscope is inserted into the child’s nasal passages. The endoscope is attached to a bright light and a camera, which allow the team to view the inside of the nose and throat.

During the VFSS and the FEES, the swallow team, including a speech-language and/or occupational therapist and a physician (either a radiologist for VFSS or an otolar yngologist for FEES) observes aspects of the child’s swallowing function, such as his or her ability to clear the throat between swallows and protect the airway during swallowing. If a problem is detected, the swallow team may try different strategies to improve swallowing, such as offering a slower-flowing bottle nipple or changing the child’s position.

If difficulties of the esophageal phase of swallowing are suspected, an imaging study completed in radiology called an upper GI or esophagram may be ordered.

HOW CAN I HELP MY CHILD WITH A SWALLOWING PROBLEM?

The most important way that parents and medical providers can help children with dysphagia is to take steps to protect their children’s lungs, as ongoing aspiration can negatively impact pulmonary health. An evaluation with a pulmonologist for further assessment of lung health may be beneficial. Children with severe or persistent dysphagia may be referred to other medical specialists, such as an otolaryngologist or neurologist, for further evaluation as to the cause of the swallowing problem.

Maintaining adequate nutrition and hydration is another critical component of caring for children with swallowing problems. A dietician and/or gastroenterologist may be involved in the child’s care. After the swallow study, the evaluating team will provide recommendations about types of food and liquid that the child is able to swallow most safely. Modifying the child’s diet by minimizing exposure to foods that are more likely to be aspirated and offering foods that can be swallowed safely is an important step that can be taken to give the child the consistent experience of swallowing food and liquid with minimal aspiration.

For children who have severe dysphagia and are unable to swallow any food or liquid without aspirating, providing ongoing positive stimulation to the mouth through play, textured toys, and controlled experiences with small amounts of food and liquid (if approved by the medical team) can help the child maintain and develop skills for using his or her mouth.

Feeding and other developmental therapists can provide helpful services to children with swallowing disorders by teaching skills that support safe and functional feeding and swallowing. Those skills may include teaching the family appropriate positioning and pacing of the mealtime, working on underlying control and strength at the core of the body, and helping children control food or liquid more effectively in the mouth. It is important that therapy for feeding and swallowing issues is individualized for each child and addresses the areas of difficulty identified during the child’s feeding or swallowing evaluation.

PARENT TIPS FOR SWALLOW STUDIES

BEFORE THE STUDY:

• Find out what to expect during the swallow study. For example, will it be a videofluoroscopic swallow study or a fiberoptic endoscopic evaluation of swallowing? Will you be able to feed your child? What will
  your child be eating and drinking?
• Contact the swallow team ahead of time to make a plan that will work best for your child if you are concerned about whether your child will participate. Many hospitals have child life specialists who can help children be more comfortable during medical tests.
• Be aware that the swallowing team may make recommendations to change your child’s diet to help them swallow more safely.

DURING THE STUDY:

• Help the swallow team to support your child. Bring preferred cups, plates, utensils, foods, and drinks from home. Tell the team if your child has special routines that help him or her eat or drink.
• Make sure you understand the results and recommendations before you leave the appointment. Ask for clarification if you are unsure how to follow the recommendations at home.

AFTER THE STUDY:

• Discuss the results with your child’s doctor and/or medical team.
• Find out who to contact if your swallowing recommendations are not working or if you have follow-up questions.

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If your child’s pediatrician recommends a swallow study, visit a medical care center that specializes in treating patients with Down syndrome. Find one at bit.ly/global-medical-care.

About the Authors
Arwen Jackson, M.A., CCC-SLP, and Jennifer Maybee, OTR, M.A., CCC-SLP, are both speech-language pathologists and feeding and sw allowing specialists at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado. They work with parents and individuals with Down syndrome to manage dysphagia through the Sie Center’s weekly Feeding Clinic.

References

• Frazier, J. B., and Friedman, B. (1996). Swallow function in children with Down syndrome: a retrospective study. Developmental Medicine & Child Neurology, 38, 695–703.
• Jackson, A., Maybee, J., Moran, M. K., Wolter-Warmerdam, K., and Hickey, F. (2016). Clinical characteristics of dysphagia in children with Down syndrome. Dysphagia, 1–9.
• O’Neill, A. C., and Richter, G. T. (2013). Pharyngeal dysphagia in children with Down syndrome. Otolaryngology – Head and Neck Surgery, 149(1), 146–150.

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People with Down syndrome and their families are Republicans, Democrats, and Independents. As a nonpartisan, leading research and advocacy organization, the Global Down Syndrome Foundation (Global) is focused on protecting and furthering the rights of people with Down syndrome regardless of party. To this end, we are deeply engaged with developments associated with health care reform, and we are providing an update to our friends and supporters on how this legislation may impact individuals with Down syndrome, how our community can participate in this national debate and take action.

Several weeks ago, President Trump, House Speaker Paul Ryan and other Republican leaders introduced the American Health Care Act (AHCA) to repeal and replace major pieces of the Affordable Care Act also known as Obamacare. The President could not garner enough votes within the Republican Party to pass the AHCA in the House. However, the President and his administration along with several members of Congress have continued negotiating further modifications to this legislative proposal and it is possible that the House of Representatives will schedule a vote as early as this week.

Global is encouraged that certain Obamacare provisions have been retained by the new proposal such as parents being allowed to keep their children up to age 26 on their health insurance policy. However, as the newly negotiated proposal stands, Global is concerned that there is not enough protection for people with pre-existing conditions. Given that Down syndrome may be considered a pre-existing condition by many health insurers and given the prevalence of other pre-existing conditions like certain cancers, and diabetes among individuals with Down syndrome, the importance of this issue cannot be overemphasized.

In particular, we respectfully urge our President and Congress to not include state waivers that would allow health insurers to charge much higher premiums to Americans with pre-existing conditions. We also oppose elimination of the “essential health benefits” requirement meaning health plans could discontinue coverage for many crucial medical services.

If you share these concerns, or have other concerns, please contact your local U.S. Representative and let them know that these areas of health care should not be sacrificed and that the most vulnerable Americans need protection.

As Congress continues debate on health care reform, Global is dedicated to working with our friends on both sides of the aisle, and with our Down syndrome and differently-abled communities, to ensure that people with Down syndrome continue to have access to affordable, quality health insurance.

Thank you for your advocacy and support!

Want to reach out to your U.S. Representatives to voice your concerns? Here’s a script to follow if you do contact them: 

“Hi.  My name is _________ and I live in [Hometown, State].  I’m a constituent and Global Down Syndrome Foundation advocate.  My mailing address and/or email address is _______________ so that you can send me a response to my call.

I understand that the House of Representatives is considering legislation that would make changes to the patient protections in the Affordable Care Act.

I am particularly concerned about a provision in the legislation that would allow health insurers to charge much higher premiums to Americans with pre-existing conditions.

Some health insurance plans consider Down syndrome to be a pre-existing condition.  Additionally individuals with Down syndrome have a much greater chance of having other pre-existing conditions like cancer, heart disease, and diabetes.

I am also deeply concerned that the bill would eliminate the “essential health benefits” requirement meaning health plans could discontinue coverage for many crucial medical services.

Please tell the Representative about these concerns and ask that they refrain from passing health reform legislation that eliminates these important patient protections and limits the scope of medical services available to our community.

Thank you.”

The Global Down Syndrome Foundation and Megan Bomgaars, star of A&E’s Born This Way, have teamed up to continue the fight for further research of auto-immune disorders. Megan suffers from celiac disease, an auto-immune disorder that affects people with Down syndrome at a rate ten times greater than in the typical population. Megan launched Global’s celiac disease research and awareness campaign at the March 11th I Love You Dance Party where she danced the night away with 150 celebrants and encouraged fellow self-advocates to participate in a simple Down syndrome and celiac disease research program aptly named “Spit to be Fit!”

Through the Crnic Institute’s Grand Challenge Grant Program, Global funds research by Dr. Richard Spritz, M.D., Program Director for the Human Medical Genetics and Genomics Program at the University of Colorado School of Medicine. Dr. Spritz’ research could lead to a test that identifies people with Down syndrome who have the highest risk for celiac disease and other autoimmune disorders including type 1 diabetes, autoimmune thyroid disease, vitiligo, and rheumatoid arthritis. Early detection would allow early intervention and treatment and could have application to the broader population suffering from such autoimmune disorders.

Celiac disease is an autoimmune disorder where the affected individual has a hypersensitivity to the protein gluten—commonly found in wheat, barley and rye—which, when digested, causes damage to the small intestine. In addition to the common uncomfortable symptoms, some celiac sufferers with Down syndrome have symptoms including anemia and behavioral changes. Megan knows the challenges of celiac disease all too well. Though there is no benefit to a gluten-free diet for those without a celiac disease diagnosis, due to the high incidence of celiac disease in individuals with Down syndrome, experts recommend they get screened for the disorder with a simple blood test.

For over 5 years, the Sie Center has been supporting children with Down syndrome and their families by offering a variety of specialized clinics including the Feeding Clinic.

The Feeding Clinic is comprised of several experts in Down syndrome who conduct an overall assessment and provide a multi-disciplinary, collaborative approach to care. These specialists include a Developmental Pediatrician or Nurse Practitioner, Physical Therapist, Feeding and Swallowing Specialist, and Social Worker. There are times when it is necessary to have nutrition or a lactation specialist come to the Sie Center to consult on a patient as well.

Arwen Jackson

Arwen Jackson, MA, CCC-SLP, a feeding and swallowing specialist at the Sie Center, describes the clinic as an ideal place to come for determining specific strategies and appropriate next steps to assist in safe and efficient eating and drinking. Eating and drinking are both critical issues for children with Down syndrome because they are prone to feeding and swallowing challenges.

“Children with Down syndrome can present with medical conditions that impact breathing, endurance, and digestion. The multi-disciplinary approach of the Sie Center allows families to receive hands on care from multiple specialists in one clinical appointment,” says Jackson.

The feeding clinic takes place once a week on Thursday mornings. They usually see 3-4 patients and appointments last around three hours. Parents can expect to receive supportive strategies and feeding equipment based on the child’s particular needs. Additionally, they will get specific goals and recommendations for type and frequency of therapy when needed. Jackson describes the most rewarding part of a clinic visit as “watching a caregiver smile in response to a successful feeding experience.”

For parents experiencing feeding and swallowing issues, Jackson offers the following guidance as a starting point:

1. Safe and supportive positioning is crucial for the child’s success with oral feeding especially in the presence of low muscle tone.

2. Feeding development is best supported within the context of a typical mealtime routine, when a child is offered foods that match their oral motor skills, and their caregivers pay attention to their child’s verbal and non-verbal communication.

3. Seek help from a feeding and swallowing specialist if you observe coughing or choking during drinking, unexplained respiratory illnesses, concerns with weight gain, overstuffing and pocketing of foods, refusal behaviors, decreased variety and volume of food consumed, delayed attainment of self-feeding skills, or challenges transitioning to cup drinking.

As part of a network of affiliates including the Global Down Syndrome Foundation and the Linda Crnic Institute, the Sie Center for Down Syndrome helps advance the total care of children with Down syndrome by providing excellent medical care, therapy, research and advocacy. For more information visit www.siecenter.org.

Recipient of Global’s Award of Excellence in Behavioral Health & Nutrition and author of the Down Syndrome Nutrition Handbook, Joan Guthrie Medlen shares her three important tips for healthy living and well-being.

“Advice for People with Down Syndrome on Eating Well and Living Well”

The November 2015 Global Down Syndrome Foundation Educational Series focused on Nutrition and Lifestyles for Children, Teens, and Adults with Down Syndrome.

160 parents and professionals attended the two-day conference with overwhelmingly positive feedback:

“Always excellent presentations, content, facilities, food, etc. Thank you!” – Jerry Shelsta

“Thank you for all you provide for our community!” – Jenni Rysavy

“Always enjoy the great learning opportunities you provide. Thank you!” – Barbara Ritchie

“Presenter was well informed and well spoken. Loved the sensory section!” – Melissa Armour

“Lots of Q&A time!”– Ashley McCasuker

Joan Guthrie Medlen, Med, RDN, LD, is a registered dietitian who became involved with Down syndrome issues when her son Andy was born with Down syndrome 26 years ago. She has published two popular books promoting healthy lifestyles for people who are differently-abled, The Down Syndrome Nutrition Handbook, and Cooking by Color: Recipes for Independence. She is also the winner of numerous awards, including the Global Down Syndrome Foundation’s Award of Excellence in Behavioral Health & Nutrition. To access her Global Down Syndrome Educational Series presentation please click here.

The Global Down Syndrome Foundation raises critical funds every year to support the excellent medical care provided at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

The Sie Center provides the highest quality of comprehensive care to children with Down syndrome by coordinating medical care, along with therapies including speech, physical and occupational. The Sie Center serves as a resource for families and primary care doctors by providing up-to-date information while also supporting parents who have received a prenatal diagnosis of Down syndrome.

The Sie Center has treated over 1,100 unique patients with Down syndrome. The multi-disciplinary “Dream Team” of experts has more than 80 years of combined experience in caring for children with Down syndrome and developmental disabilities.

In 2015, the Sie Center expanded its staff by hiring an education specialist, psychologist and a speech language pathologist. In 2016, look for new clinics and outreach programs designed to assist even more patients and families.

This important work could not be accomplished without support of donors.
Please consider donating today.

Generous grant from the Anna and John J. Sie Foundation enables Sie Center to expand dream team with Education Specialist, Alissa Beck.

The Anna and John J. Sie Center for Down Syndrome is proud to announce the addition of Alissa Beck as the Center’s new Education Specialist. The Sie Center opened in November 2010 and has treated over 1,000 unique patients with Down syndrome under the age of 26. But, because children with Down syndrome and their families have a significant need for the services of an Educational Specialist, the Anna and John J. Sie Foundation provided a generous grant to expand the Sie Center’s roster.

Beck’s role is to improve educational performance, self-esteem and socialization skills in order to enhance the quality of life of children and young adults with Down syndrome. Prior to joining the Sie Center, Beck was an integral part of the Denver metro area’s Cherry Creek School District. She has dedicated her career to promoting quality education for all students through inclusion, differentiation, support and compassion.

“I am very excited about the relationships I am being able to foster with the families that come to the Sie Center and to support them through their child’s educational journey,” said Beck.

As Educational Specialist, Beck will provide resource support for children with Down syndrome to address their school-related issues. Many schools are not organized to support children with Down syndrome. Beck will serve as a liaison and outreach coordinator for these families’ in their efforts to maximize the student’s academic experience and success.

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