Global Webinar Series – Spring 2019 Recap | Global Down Syndrome Foundation

Global Webinar Series – Spring 2019 Recap

SPRING 2019

Take A Deep Breath: Lung Infection &
Cognition in Down Syndrome


What You Need to Know


Overview & Speakers:

This webinar discusses the connection between lung infection and cognition in Down syndrome. Find out what families need to know and important new research that can benefit your loved ones with Down syndrome. Key takeaways from this presentation:

  • How Trisomy 21 leads to respiratory and autoimmune diseases
  • How infectious lung disease likely impacts cognition
  • New research on lung disease, autoimmunity, and Down syndrome that could greatly impact quality of life and help people with and without Down syndrome that face these conditions
Michael Yeager, PhD

Michael Yeager, PhD.

Michael Yeager, PhD. is an Associate Professor in Pediatrics and Bioengineering at the University of Colorado. He earned his Ph.D. at CU in Experimental Pathology and completed post-doctoral fellowships at Johns Hopkins Medical Institutes and National Jewish Hospital. His primary research interests have focused on inflammation and fibrosis of the lung vasculature and the right ventricle in children and adults with pulmonary hypertension and idiopathic pulmonary fibrosis. Recently, he has been investigating why persons with Down syndrome are more susceptible to infectious lung disease. He is grateful to be funded to do this work by the Linda Crnic Institute for Down Syndrome, the American Heart Association, and the Jerome Lejeune Foundation.


Overview:


Powerpoint Presentation: Click to Download


Questions & Answers:

Veronica, a parent in Albuquerque, NM:

1. Is there a pneumonia vaccine available for adults with Down syndrome?

There is no pneumonia vaccine specifically indicated for adults with DS, however, current CDC guidelines recommend two vaccines to help prevent pneumococcal disease: PCV13 and PPS23. Currently, there is limited data on the effectiveness of these in persons with DS, but the studies so far to date indicate that there is reduced response to these vaccines in some but not all persons with DS. Of course, you should discuss any medical decisions with your clinician.

 
2. Do you have any recommendations for preventing lung infection?

Yes. We all can wash our hands more often with soap and water (vigorously!), avoid crowds during the cold and flu season, maintain good overall oral hygiene, keep up with vaccination schedules, and get a flu shot.

Karen, a parent in Dallas, TX:

1. Is there any research being done on lung disease as a predictor of future cognitive or functional decline?

Yes, but none so far that is specific to DS. The newest data on this topic come from following kids that required heavy treatments with corticosteroids to control childhood lung problems. The data suggests that these individuals may be prone to more lung health challenges as adults. The question of whether there are increased cognitive issues in persons with chronic lung disease is a question my lab group is currently studying.

2. What are your recommendations to best stop sicknesses from progressing into pneumonia?

Whenever possible, consult your clinician immediately, don’t wait! You can better manage other factors that contribute to a higher risk of bacterial pneumonia such as controlling asthma, diabetes, and nutritional status.

Karen, a parent in Hamilton, OH:

1. Are regular use of Alvesco and/or Ventolin inhalers the most effective way to avoid lung infection in children aged 2 to 5?

Asthma medications and bronchodilators are not indicated for preventing lung infection.

2. If yes, what are the long term side effects of using the inhalers every day during cold and flu season?

As with all medications, there are potential short-term and long-term side effects, and you should discuss these concerns with your clinician.

3. Can serious lung infection in childhood have long term effects on the lungs (example: scar tissue on the lung – could a person be more susceptible to cancer)?

Lung infections, as is the case with lung traumas, can damage and scar the lung. We know now for some that mechanically injured tissues are sites where cancer metastases are more likely to develop. Trauma has been proposed to be a potential cause of cancer, but there is a lack of strong clinical evidence to support this. It would be a reasonable goal to reduce the incidence and severity of lung infections in everyone.

Howard, a parent in Aachen, Germany:

1. We have mild but chronic asthma in my family. Could that deepen potential problems for my daughter?

You can reduce other factors that contribute to a higher risk of bacterial pneumonia such as controlling asthma, diabetes, and nutritional status.

2. Are the knock-on effects for cognition linked to inflammation and/or sleep deprivation?

Studies are underway that are examining potential links between chronic infections and reduced/impaired cognition.

3. What does the latest scientific research recommend in terms of treatments, therapies, diets, medicines, etc. – especially preventive ones?

We all can wash our hands more often with soap and water (vigorously!), avoid crowds during the cold and flu season, maintain good overall oral hygiene, keep up with vaccination schedules, and get a flu shot. In addition, we can better manage other factors that contribute to a higher risk of bacterial pneumonia such as controlling asthma, diabetes, and nutritional status.

Jennifer, a medical professional in Orlando, FL:

1. Does low tone contribute to respiratory problems?

Low tone (hypotonia) can contribute to lung problems due to higher risk of aspiration, insufficient cough, difficulty in swallowing (dysphagia), and reflux.

Jeffrey, a parent in Bethlehem, PA:

1. Is there any relation between obstructive sleep apnea and cognition? If so, what is the recommended treatment?

The most recent available meta-analyses on obstructive sleep apnea (OSA) and cognitive deficits suggests that OSA is associated with deficits in memory, attention, executive function, psychomotor function, and language.

Anne, a parent in Longmont, CO:

1. How much does open heart surgery affect ongoing lung health? My daughter had an ASV DSV repair at 10 months, she is now 37.

Post-operative pneumonia is a large and serious problem immediately following heart surgery in ~ 3-5% of cases. Whether this is worse or higher risk in persons with DS is not well studied, and neither is long-term lung health following heart surgery for all persons.

Wendy, a parent in Eagle River, AK:

1. Do you consider asthma an infectious lung disease that likewise affects cognition?

No, asthma is considered an infectious lung disease. However, the airways narrowing, increased mucus production, and hypersensitivity, when poorly managed, can contribute to increase lung infections.

2. Is there a higher prevalence of pulmonary fibrosis in people with DS?

There is no data that would support increased prevalence of pulmonary fibrosis in DS. However, persons with DS are known to have more subpleural (just underneath the surface lining of the lung) lung cysts. We do not yet understand the true incidence and long-term course of these lesions.

3. Would it be beneficial to treat overactive immune system w/ non steroid systemic immunosuppression such as methotrexate, hum era?

You should consult your clinician on this question. Broadly, we know that the immune systems of persons with DS are different than typical individuals. Therefore, until we have a better understanding of these differences, the use of drugs that modify immune system responses (ex: methotrexate for rheumatoid arthritis and cancer) would be potentially very dangerous.

Jen, a caregiver in Lakewood, CO:

1. What can be done to strengthen our kiddos lungs so they can avoid infection or fight them better?

Following the preventive care as outlined on previous questions is a great way to avoid infections.

2. What vitamins/supplements are beneficial to lung health for our kiddos?

There are no strong scientific data specifically linking vitamins and lung health benefits, but a healthy with or without a multivitamin is likely beneficial. As always, consult your clinician to discuss.

3. Is it better to live in a dryer climate or a more moist one? What are your thoughts about living at elevation and our kiddos lungs?

According to the American Lung Association citing a 2013 study from Johns Hopkins, there is a relationship between rising temperatures and emergency room admissions for chronic obstructive pulmonary disease (COPD) and also respiratory tract infections in persons 65 years of age and older. However, for some people, cold dry air can irritate airways leading to coughing, wheezing and shortness of breath. Air pollution is increasingly being linked to lung function problems. Living at elevation (mild hypoxia) can also be difficult. Check with your doctor if you plan to travel or are having seasonal issues.

Attendee in Alaska:

1. Do different lung biomes affect cognition in the same way gut biomes do?

We do not know, however, we are currently tacking questions related to the lung-gut microbiome axis and cognition in DS.

Lila, a parent in Colorado Springs, CO:

1. How is cognition negatively affected by lung infection versus cognition is reduced because kids aren’t in school/are in the hospital or at home which is probably less a stimulating/challenging environment than school?

This specific question regarding the contributions of cognitive impact has not yet been scientifically explored.

Karen, a parent in San Francisco, CA:

1. Our son had pneumonia twice before the age of 3, hospitalized for one of those infections. Our pediatrician gave him a vaccination for multiple strains of pneumonia and it definitely helped. Our son’s new pediatrician is not that open to a booster. Do you feel our son will need another vaccination for the pneumonia strains or will the one he received earlier last into adulthood?

This is an important question and one that we are actively trying to answer more definitively. More and larger studies are needed to better understand vaccine responses in persons with DS. The most recent data from the Crnic Institute suggest that persons with DS are a much more variable group at the molecular level than we were aware of. Some persons with DS appear to mount an effective vaccination response while others may have a reduced response. We suggest a continued open dialogue with your pediatrician.

Melissa, a parent in Shaker Heights, OH:

1. Is it common for an adults with DS to get viral pneumonias, such as RSV?

Children with DS are at increased risk of severe RSV infection. The data in adults with DS and RSV is lacking.

Beatriz, a parent in Lexington, KY:

1. Any thoughts on Vitamin D3 supplementation to help the immune system? If yes, what is the dosage?

Vitamin D has important roles for calcium and bone health but has been increasingly shown to be important for proper immune system function. Deficiency in Vitamin D has been associated with increased autoimmunity and increased susceptibility to infection. However, according to the Mayo Clinic, taking 60,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the Recommended Dietary Allowance (RDA) for most adults of 600 IU of vitamin D a day. It is very important that prior to starting any type of diet regimen that you consult with your clinician

2. My son had respiratory issues frequently, especially during the winter time and after I started him on daily vit D3 he stopped to have issues, maybe once a year now! I would love to exchange some info.

Please see the earlier response regarding Vitamin D3.

Robbin, a parent in Pewaukee, WI:

1. Are pneumonia vaccines beneficial for people with DS?

Please see earlier responses to this question.

2. Are steroids a possible solution for anti-inflammation or detrimental to people with DS?

Please see earlier responses to this question.

3. Do these pseudo lymph nodes also show up in heart? My daughter had something like this found in her pericardium when she had her open heart surgery. Docs were unfamiliar with this.

I am unaware of lymphoid tissues appearing in or around the heart.

Connie, a caregiver in Williamsville, NY:

1. Do you recommend the flu shot? I have heard it can contribute to Alzheimer’s.

Please see earlier responses to the question regarding a flu shot. The best studies we have indicate that flu shots do not increase the risk of Alzheimer’s disease. In fact, the two best studies (one in 2001 and another in 2004) reached similar conclusions that flu shot were associated with decreased risk of Alzheimer’s disease and decreased risk of death from all causes.

Cassie, a parent in Estes Park, CO:

1. My daughter is rarely diagnosed with “lung infection” (pneumonia twice in 4 years – no other lung diagnosis) but very frequently has ear and sinus issues. Could this be due to the same immune response mechanisms and could that also affect cognition?

We don’t know yet but that is our working hypothesis, and we are working as hard as we can to get the answers.

2. What about Flovent steroid inhaler for “lung inflammation” – is that considered aggressive?

Please see earlier responses to this question regarding inhalers.


 


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