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Global Webinar Series – Fall 2019 Recap

FALL 2019

What Families Need to Know: Utilizing the Pediatric Medical Care Guidelines for Down Syndrome

What You Need to Know

Overview & Speakers:

This webinar discusses the importance of utilizing the American Academy of Pediatrics Guidelines Health Supervision of patients with Down Syndrome, published in 2011. Find out what families need to know. Key takeaways from this presentation are:

To better comprehend the utilization of the Guidelines in medical care of our kids

To recognize the importance of ongoing thyroid, hearing and vision

To understand the increased risk of respiratory illnesses including pulmonary illnesses, pneumonia, and aspiration in individuals with Down Syndrome

Francis Hickey, MD

Francis Hickey, MD

Fran Hickey, MD joined the Linda Crnic Institute for Down Syndrome as Medical Director of its Anna and John J. Sie Center for Down Syndrome in 2010 and he has been involved in the care of individuals with Down syndrome for over 2 decades. Since 2010, Dr. Hickey has organized a multi-disciplinary team of experts interested in children with Down syndrome along with a dedicated research team. He has evaluated nearly 1800 unique individuals with Down Syndrome from across the country and internationally the past 9 years. Sie Center clinics developed include: General Clinics, Infant Clinic, Feeding Clinic, School Age Clinic, Prenatal Clinic, and 2 Sleep Clinics. His research has concentrated on clinical studies involving identification and interventions for comorbidities found in children with Down syndrome. Dr. Hickey has directed over 30 research projects. He has authored or co-authored 30 articles in scholarly publications on Down syndrome. Also, he has developed an academic teaching program on Down syndrome for residents, medical students and fellows who have rotated through the Sie Center clinic. The team developed an innovative Down Syndrome Guideline Chart 1-page summary chart of AAP Guidelines Health Supervision of Down Syndrome Patients. Dr. Hickey and his wife, Kris, are the parents of four children, one of whom has Down syndrome.

Key Takeaways:

Powerpoint Presentation: Click to Download

Additional Handout: Click to Download

Questions & Answers:

Laura, a member of the Down Syndrome Association of Central Texas:

1. Beyond giving copies to medical professionals and encouraging families to do so as well, do you have any suggestions for encouraging physicians to utilize the guidelines?

I would provide AAP Guidelines and guideline chart. I would emphasize the AAP has endorsed these guidelines to maximize the health of our children. Guidelines are clear for testing thyroid, hearing, ophtho, Cardiology, and sleep study Parents should be aware of guidelines.

2. Is there anyone besides parents/caregivers and physicians you recommend local Down syndrome associations provide these guidelines to? (e.g., ECI programs, private therapists, etc)?

I would offer appropriate sections of the guidelines to all providers. Excellent idea!

3. Is the AAP working on an update to these 2011 guidelines?

Yes, the AAP is reviewing the guidelines.

Jena, a member of the Down Syndrome Association of Greater Cincinnati

1. I present the guidelines to each family when I meet with them after birth. What should I be saying when I present them?

Congratulations on doing this. The family and the baby should be congratulated, and the family should be allowed time to adjust. I would explain these are long term health guidelines and allow the child to reach their health potential. Fairly easy to follow. A follow discussion may be beneficial with the family.

2. In the early days, parents often feel like everything is out of their control. I find that these guidelines help to give them some control over their child’s healthcare. Are there any other ideas to help give some control back to the parents during this time?

Always concentrate on child’s potential and their enjoyment of life. Meeting other families through DS parent groups allows better knowledge and control. I agree with offering the guidelines as control of their child’s healthcare. Great idea!

3. Who should the parents present these guidelines to other their pediatrician?

Subspecialist, EI team. Therapists.

Karen, a parent in Jacksonville, FL:

1. Have there been any changes to the recommendations for the AAI screenings in recent years?

Since 2011 AAP guidelines have not recommended routine screening for AAI

2. What recommendations do you have for sleep studies if your child is a teen?

No routine recommendation. Consider symptoms like snoring and daytime sleep as consideration of sleep study.

Karen, a parent in Winter Garden, FL:

1. Why if our children have high incidence of thyroid disease, they don’t get a complete thyroid panel? Instead, they just get a THS and T4.

Endocrine specialists recommend TSH and T4 for the assessment of thyroid function.

Michele, a relative in West End, NC:

1. As a grandparent of a 12-year-old with DS, how can we encourage the parents to seek specialized assessment when they have not since birth?

Emphasize the importance of the guidelines and that earlier screening will allow the best health outcome. Meet at DS clinic or DS parent groups.

Patti, a parent in Portage, MI:

1. How is eczema treated?

See PCP since treatment is not related to DS

2. Hypothyroid-what’s best treatment and why?

Treat with Synthroid to normalize thyroid labs

3. Please recommend activities to aid in continuous, lifelong cognitive learning.

This is not easy to summarize. However cognitive stimulation like academic/reading, social activities, physical activity, and appropriate recommendations from school, therapists and family members. It should be continued learning.

Tangi, a parent in Cranbury, NJ:

1. Do you recommend children with DS getting the HPV shot (aka Gardasil)?

Yes, all vaccines recommended by CDC, AAP

2. On an average, how many are able to read? My son is 12 and has little interest in reading.

All children with Down syndrome are individuals and reading is variable in our children. I would discuss with school specialists to address this issue and continually work on reading skills.

Laura, a parent in San Ramon, CA:

1. Is it imperative that the pediatrician have these guidelines? And how do we get them to them and assure they get trained and well-versed about my child with DS?

It is imperative for the health of your child. The guidelines are easy to implement especially with the chart.

2. What’s the best method of testing for Thyroid, hearing, and vision and how often should our children with DS be tested?

Booth hearing with audiology every 6 month until 3 yo then annually; T4, TSH every 6 months until 2 yo then annually; ophthalmology yearly but determined by MD

Chantel, a parent in St. Lucia:

1. What can be done to alleviate stuffiness when he has no cold?

Discuss with PCP, may need ENT referral

2. How can you detect a respiratory before it is too late?

Again, need close follow up with PCP

Carol, a medical professional in Littleton, CO:

1. When should my child be screened for AAI?

Please see below

Michelle, a parent in Barboursville, WV:

1. At what age should a child with DS be screened for Atlantoaxial Instability (AAI) and if it is negative should this ever be repeated later in life?

Since 2011, AAP guidelines have not recommended routine screening for AAI

2. I work at our local School of Medicine with Project DOCC, training residents and medical students about the delivery of Chronic Care. Where can I learn more about your training program for students who rotate through the Sie Center clinic?

Sie Center training includes following a child with Down syndrome through our clinic with medical provider, PT, Speech and Education specialist. After the clinic discussion includes training. Syllabus including Health Guidelines for Children with Down Syndrome 2011 is provided. https://pediatrics.aappublications.org/content/128/2/393.full

3. Statistically speaking, are there more adults living with DS now than children?

This would take statistic evaluation.

4. What is the current average lifespan for adults with DS?

Into their 60’s

Laura, a parent in San Ramon, CA:

1. My 14-year-old suffers with plaque psoriasis on his scalp, ears, scalp. What is it related to? Any natural solutions?

Psoriasis is rare and problematic, I would refer to PCP and Dermatologist if possible

Tara, a parent in Superior, CO:

1. Where can pediatricians get the 2011 Guidelines, if they don’t already have them?

Health Guidelines for Children with Down Syndrome 2011: https://pediatrics.aappublications.org/content/128/2/393.full

Kristen, a parent in Lakewood, CO:

1. What are your thoughts on developmental/behavioral optometry or neuro optometry for kids who pass the vision screening, but still show vision challenges in daily life i.e. convergence? As far as I know, there isn’t science to back up these therapies and we had 2 visits with a developmental/behavioral therapist (optometrist), but it was kinda ridiculous. Is there any validity to this therapy? Are neuro optometrists a better way to go?

I discussed this issue with our Pediatric Ophthalmologist and they do not recommend this therapy.

Jeanne, a grandparent in Littleton, CO:

1. Any information on the NECK growth and any NECK problems on children ages 3-5 years old?

I think this is related to AAI cervical issue, see above.

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