COVID-19 Guidance for People Living with Hydrocephalus

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    HA Medical Advisory Board Recommendations Regarding COVID-19 for Patients with Hydrocephalus

    HA COVID-19 Update January 11, 2021

    High-Level Summary

    (Full article follows this bullet list.)

    • Hydrocephalus by itself is not a risk factor for contracting COVID-19 or developing severe COVID‑19 disease.
    • Hydrocephalus treatment (shunt or ETV) does not increase a person’s risk for contracting COVID‑19 or developing severe COVID-19 disease.
    • The Medical Advisory Board strongly encourages persons with hydrocephalus over the age of 16 years and their families to be vaccinated for COVID-19 when they become eligible according to federal, state, and local guidelines. (more information is below)
      • SPECIAL NOTE ON CHILDREN BELOW THE AGE OF 16 YEARS: Studies of the COVID-19 vaccines in children are still in progress. Guidance on children will not be available until these studies have been completed and reviewed by the FDA.
    • Learn how states are prioritizing who will get the COVID-19 vaccine. The first step to getting your vaccination is finding out when you will be eligible to receive it in accordance with your state’s guidelines.
    • Obtain information about COVID-19 and the COVID-19 vaccine from reliable sources, including the Centers for Disease Control, Health Canada, the World Health Organization, state or provincial health boards, and the Hydrocephalus Association. Please be careful not to respond to information on the internet that may be untrustworthy, or that may try to sell you bogus advice, treatments, or vaccines.
    • People with hydrocephalus who are over 60, and those of any age who have coexisting health conditions, such as heart disease, diabetes, immune suppression, or lung disease, should consider themselves in the higher-risk population for developing severe COVID-19, as described by the CDC
    • Nobody is immune from COVID-19. Persons of all ages, including infants, children, teens, young and middle-aged adults, and the elderly, are at risk for contracting COVID‑19, including a risk for developing severe COVID-19 disease.
    • Fear of COVID‑19 should not stop you from seeking necessary medical care, but call your physician’s office first so that they can recommend how and where to be treated.
    • If you are experiencing symptoms that are concerning for shunt malfunction or another issue that could be harmful to you if not addressed promptly, please contact your physician’s office, or, if there is an emergency, call 911 or the number for emergency services in your community.
    • The only way to avoid and defeat COVID-19 is to prevent it from spreading. Everyone should follow CDC guidance, as well as federal, state, and local governmental guidance to stay safe at home, to leave home only if necessary, to wear a mask, to avoid large gatherings as defined by your state and local health department, to practice social distancing (keeping space between yourself and others), to wash your hands often, and to avoid non-essential travel.

    An issue of great concern to our members is whether hydrocephalus is considered a risk factor for contracting or developing severe COVID-19. Additional concern has also been raised as to whether or not the vaccine is safe to receive for individuals with hydrocephalus.

    Hydrocephalus and Risk Factors for the COVID-19 Vaccine

    • The Medical Advisory Board strongly encourages persons with hydrocephalus over the age of 16 years and their families to be vaccinated for COVID-19 when they become eligible according to federal, state, and local guidelines.
      • SPECIAL NOTE ON CHILDREN BELOW THE AGE OF 16 YEARS: Studies of the COVID-19 vaccines in children are still in progress. Guidance on children will not be available until these studies have been completed and reviewed by the FDA.
    • The benefits of COVID-19 vaccinations for individuals and for the public far outweigh the risks.
    • The FDA guidance and published information for both the Pfizer/BioN Tech (Pfizer-BioNTech COVID-19 Vaccine | FDA) and the Moderna (Moderna COVID-19 Vaccine | FDA) vaccines list no risk factors for adverse events except for persons who are already known to have an adverse reaction to the vaccine or to any ingredients in the vaccine.
      • If you have had reactions to vaccines in the past, please consult your physician about your individual safety for the COVID-19 vaccine.
    • No disease or disorder, including hydrocephalus or having a shunt, has been documented to increase the risk of adverse reactions to the vaccine(s).
    • The vaccines do not contain the COVID-19 virus or virus particles.
    • Vaccination is not considered complete or effective until a person has received the number of recommended doses. Currently, both the Pfizer/BioN Tech and the Moderna vaccines require 2 doses within a time frame of approximately 3-4 weeks.
    • Learn how states are prioritizing who will get the COVID-19 vaccine. The first step to getting your vaccination is finding out when you will be eligible to receive it in accordance with your state’s guidelines.
    • Although COVID-19 vaccination prevents development of COVID-19 infection, it is not yet known whether it prevents vaccinated persons from carrying or transmitting COVID-19 to others.
    • As such, the CDC recommends that everyone, including persons who have received a COVID-19 vaccination, continue to wear appropriate masks or face coverings, and participate in federal, state, and local guidance for measures to prevent the spread of COVID-19.

    Hydrocephalus and Risk Factors for COVID-19

    After a review of the published medical literature, the Chair and Vice-Chair of the HA Medical Advisory Board, Dr. Michael A. Williams and Dr. Mark G. Hamilton, state that hydrocephalus has not been mentioned as a specific risk factor for contracting or developing severe COVID-19 in adults or children.

    However, many persons of all ages with hydrocephalus have coexisting health conditions, and they should consider themselves in the higher-risk population, as described by the CDC, which includes older adults or those of any age with serious long-term health problems, such as heart disease, diabetes, or lung disease, as well as other ongoing serious health conditions.

    What Does “Severe COVID-19 Disease” Mean?

    Nearly all patients with severe COVID-19 have had pneumonia, and many have then developed difficulty breathing (acute respiratory distress syndrome (ARDS)), which requires insertion of a breathing tube and support from a ventilator and treatment in an ICU. Many of the patients also experience other significant complications, including very low blood pressure requiring treatment (shock), abnormal blood clotting, and effects on the function of the liver and kidneys.

    What Should Persons with Hydrocephalus and Their Families Know about COVID-19?

    • Hydrocephalus by itself has not been identified as a risk factor for severe COVID-19.
    • Persons with normal pressure hydrocephalus (NPH) should consider themselves at high risk for severe COVID-19, but not because they have NPH. Persons with NPH are at risk because they are over age 60 years, and many have coexisting conditions, such as hypertension, diabetes, cardiovascular disease, and other conditions that can make it more difficult to survive the viral pneumonia, ARDS, and complications of critical illness that are seen in severe COVID-19 disease.
    • With the exception that infants below the age of 1 year are at an increased risk of severe disease, the risk factors for severe COVID-19 in children are uncertain. The medical literature shows that children are either less likely to contract COVID-19, or that they generally have milder disease. The American Academy of Pediatrics offers guidance at their Healthy Children website.
    • Hydrocephalus treatment (shunt or ETV) does not increase a person’s risk for contracting COVID-19 or developing severe COVID-19 disease.
    • COVID-19 does not increase a person’s risk of developing a shunt infection.
    • Nasal swab testing for COVID-19 is safe for an individual with hydrocephalus. If patients have any concern about potential risk, particularly if there are other underlying neurological conditions, they should consult their doctor prior to testing.
    • Many persons of all ages with hydrocephalus have coexisting health conditions, and those individuals should consider themselves in the higher-risk population, as described by the CDC, which includes older adults or those of any age with serious long-term health problems, such as heart disease, diabetes, or lung disease, as well as other ongoing serious health conditions.
    • Because severe COVID-19 primarily affects the lungs, persons with lung disease or medical conditions that can affect breathing should be cautious. Lung disease includes asthma, COPD, emphysema, the need for supplemental oxygen, the need for chronic ventilator support, the presence of a tracheostomy, as well as other lung disorders.
    • Persons with hydrocephalus of any age can try to estimate their risk for severe COVID-19 disease by assessing whether they have other chronic health conditions, as well as the nature of their health conditions.
    • If you are in doubt or unsure about your risk category, we recommend that you follow CDC guidance, as well as federal, state, and local governmental guidance to stay safe at home, to leave home only if necessary, to wear a mask when outside of your home, to avoid large gatherings as defined by your state and local health department, to practice social distancing (keeping space between yourself and others), to wash your hands often, and to avoid non-essential travel.

    Recommendations for the Hydrocephalus Community At Large

    • The Medical Advisory Board strongly encourages persons with hydrocephalus over the age of 16 years and their families to be vaccinated for COVID-19 when they become eligible according to federal, state, and local guidelines.
    • The only way to avoid and defeat COVID-19 is to prevent it from spreading. Everyone should follow CDC guidance, as well as federal, state, and local governmental guidelines.
    • Avoid travel to hospitals, clinics, or physician offices to prevent exposure to COVID-19. If you have a scheduled appointment with your physician for a routine visit that could be safely delayed, we recommend you speak with your physician’s staff to see if the physician agrees that your appointment can be safely delayed.
    • Do not let fear of COVID-19 keep you from seeking necessary care for your hydrocephalus. If you are experiencing symptoms that are concerning for shunt malfunction or another issue that could be harmful to you if not addressed promptly, please contact your physician’s office, or, if there is an emergency, call 911 or emergency services in your community.
    • Obtain information about COVID-19 and the COVID-19 vaccine from reliable resources, including the Centers for Disease Control, Health Canada, the World Health Organization, state or provincial health boards, and the Hydrocephalus Association. Please be careful not to respond to information on the internet that may be untrustworthy, or that may try to sell you bogus advice, treatments, or vaccines for COVID-19 (i.e., scams).
    • We have seen state and local governments reverse and reinstate stay at home orders and restrictions on public gatherings as they respond to changing transmission and hospital admission rates of COVID-19 in their jurisdictions. This will continue for the foreseeable future.
    • The Medical Advisory Board advises the public that even when policies and restrictions may be eased, the risk of COVID-19 spread and infection will continue to be present. Nobody is immune from COVID-19. Therefore, everybody should monitor guidance from the CDC and federal, state, and local governments so that they can follow the best practices to prevent themselves from becoming infected.

    COVID-19 and Hydrocephalus: Q&A with Our Experts

    To hear more from our Medical Advisory Board about hydrocephalus and COVID-19, please view our two-part Q&A that was recorded Friday, March 20, 2020.

    Part 1: COVID-19 and Hydrocephalus Overview with our Experts

     


    Part 2: COVID-19 Live Q&A with our Medical Experts

     


    COVID-19 and Hydrocephalus

    An Inspirational Message from Dr. Michael A. Williams

     

    PDF DOWNLOAD: Living in an Unprecedented Time of Pandemic
    Closing comments for the Part 1: COVID-19 and Hydrocephalus Overview with our Experts Webinar


    Tools for Coping through the Pandemic

    The National Child Traumatic Stress Network – Parent/Caregiver Guide to Helping Families Cope With the Coronavirus Disease 2019 (COVID-19)

    CSTS – Helping Homebound Children during the COVID-19 Outbreak


    Helpful Informational Links

    How are States Prioritizing Who Will Get the COVID-19 Vaccine First? by the Kaiser Family Foundation

    From the Centers for Disease Control (CDC):

    American Epilepsy Society Statement on COVID-19

    Spina Bifida Association Information Related to Coronavirus (COVID-19)

    Health Canada Coronavirus Disease Information (Government of Canada)

    Child Neurology Foundation COVID-19 Response

    American Academy of Pediatrics – What You Need to Know About Coronavirus


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