Covid-19 Hub

The SADS foundation is providing regular updates for our communities. Sign up to our newsletter so you don’t miss anything!

SADS Foundation staff members continue to provide services to our families, health care professionals, and colleagues. We’re working from home, so please reach us by e-mail at [email protected] or on our Family Support Help Line 801-948-0654.

Parents’ Guidance Regarding Children & Back to School Fall 2021

Children or adults with inherited arrhythmias (e.g. LQTS, BrS, CPVT, etc.) are not at greater risk of contracting COVID-19 than anyone else. The CDC recommends: To maximize protection from the Delta variant and prevent possibly spreading it to others, wear a mask indoors in public if you are in an area of substantial or high transmission.

The SADS Foundation recommends that all adults and children 12 and over with SADS conditions receive a vaccination.

Review our complete statement on Covid-19 vaccinations

The CDC also some fantastic resources for parents as they go back to school including a new page to help you make decisions about protecting your family. You can access all this great information here.

Check out SADS Youtube Channel or Join us on Facebook or Twitter for the SADS Live sessions August 27th and Fridays in September for more back to school tips and to ask your questions.

COVID-19 Vaccine Information for People with SADS Conditions

The SADS Foundation just released a COVID-19 Vaccine statement that recommends that all individuals with SADS conditions receive a vaccination. Review the statement below.

Updates & Frequently Asked Questions
on SADS Conditions & the COVID-19 Vaccine

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If I have a SADS condition, is it safe for me to take the Moderna or Pfizer COVID-19 vaccine?

Answer from Dr. Michael Ackerman

I’ve told all of my patients and every genetic heart patient we see at the SADS Foundation that if you have a SADS condition (Long QT syndrome, CPVT, Brugada syndrome, etc.) you should get vaccinated. If you are 16 years or older, you can get the vaccine, you should get the vaccine, it is safe for your heart.

Why should I get vaccinated?

Answer from Dr. Stacey Rizza

  • The vaccine may give you longer protective immunity than an actual infection.
  • Getting the virus, even if you’re fairly asymptomatic, may have some longer term effects we’re not aware of.
  • All of us want to get back to doing things we did pre COVID. We want to see our family again, we want to get together for dinner dates, we want to go to sporting events, we want to travel. If you want those restrictions to be lifted, we need to have the virus stop moving from person to person.
  • It’s safe. It works. And if you want to get back to the way things work, even if you’re the healthiest youngest person in the world, getting the vaccine is going to help society and get us back to the way we were faster.
The vaccine was developed quickly. Does this mean it’s unsafe?

Answer from Dr. Stacey Rizza

The safety and the science were not accelerated. What was accelerated was the funding, the paperwork, the regulatory steps that were normally put in place to slow people down. The rigor, the safety requirements, and the science were not accelerated. In fact, if anything, we have more safety data over a longer period of time than virtually any other vaccine that’s been approved before. So I feel very comfortable that this is a safe vaccine.

If I am pregnant or breastfeeding, can I take the Moderna or Pfizer COVID-19 vaccine?

Answer from Dr. Stacey Rizza

The data obviously isn’t as robust about pregnant or breastfeeding people. But the FDA does not see any reason why it would not be safe, and recommended that pregnant people get it as well. There have been pregnant women vaccinated and the data is that the vaccine is safe. We do know pregnant women do not do as well with the infection. So the risk of the vaccine is much lower than you remaining vulnerable to COVID. And so we do recommend pregnant people getting vaccinated.

Is there a difference between the Moderna and Pfizer vaccine?

Answer from Dr. Stacey Rizza

They’re both the same mechanism of delivering the vaccine and their data is virtually identical. I see them as interchangeable. The only difference is the second shot of Pfizer is after three weeks, the second shot of the Moderna is after four weeks. And so that’s the only thing to be aware of. It’s slightly different, but the safety profiles, the efficacy, everything else is virtually interchangeable.

If I haven’t gotten my flu shot, should I get that before I get the COVID vaccine?

Answer from Dr. Stacey Rizza

We absolutely want you to get your flu shot right away. And you wait 14 days after your flu shot before you’re eligible to take your COVID shot. So if you’re being offered the COVID shot right now and you have an appointment tomorrow, please go do the COVID shot. And then after your series has been complete, you’re supposed to wait 14 days and then get your flu shot. But if your ticket’s not up, so to speak, for COVID right now, go get the flu shot right away. And then 14 days later, you could start the COVID series.

When can children under the age of 16 take the vaccine?

Answer from Dr. Stacey Rizza

The trials for people under 16 are underway right now. So that’s probably going to take several months till we have the data available. They need to determine how long it takes to show efficacy, and that population tends to be less affected by COVID. We’re hoping by later in the year, hopefully by summer, maybe a little bit later, that data will be complete. And if it is shown to be safe and effective, then it will be approved.

 

Are there specific contraindications to the vaccine?

Answer from Dr. Stacey Rizza

They’re very, very few for this vaccine. You can have an allergy and still get this vaccine. There are a few very, very subtle allergies that are very, very specific to some of the agents within this vaccine. And the people who have that know they’ve had allergies to previous vaccines. And they should tell their healthcare worker and the healthcare worker can specifically look into whether that agent is in this vaccine, but they’re very, very unusual and very rare. We also do take pause if somebody has had Guillain-Barre syndrome from a previous vaccine, and that’s not the vaccine causing it but your body forms an immune allergic reaction to the vaccine. It is extremely, extremely rare and has not been seen really in this one. But we would probably take pause if somebody has had that with previous vaccines. But other than very rare situations, most people can take this vaccine.

 

I have Brugada syndrome. What do I do if I develop a fever as a reaction to the vaccine?

Answer from Dr. Michael Ackerman

If you have a febrile reaction to your vaccine, just promptly lower your fever. Just properly lower your fever with acetaminophen, Tylenol, ibuprofen, whatever you like for your fever lowering strategy.

 

Can I use an Epi-Pen if I have LQTS?

We have received questions from patients regarding allergic reactions to the COVID-19 vaccine and use of an Epi-Pen. According to published articles, there is no absolute contraindication to giving epinephrine to a patient with anaphylaxis, and the patient with LQTS is no exception. Airway obstruction from angioedema, respiratory failure from bronchospasm, and circulatory collapse from anaphylaxis are immediately treatable with prompt administration of epinephrine.

Michael J. Ackerman, MD, PhD, director of the Long QT Syndrome Clinic and professor of medicine, pediatrics, and molecular pharmacology at the Mayo Clinic College of Medicine, Rochester, Minnesota, has said, “For the past 20 years in our clinic, we have recommended an Epi-Pen for our LQTS patients who have concomitant severe allergies,” for which the prevalence is the same as in the general population.

These patients have rarely had to use their Epi-Pen, and when they have, it was effective. Dr Ackerman says that the notion that beta blockers render epinephrine ineffective seems erroneous. “The only real issue that I have seen is when such patients were counseled not to have an Epi-Pen or were scared to use it out of fear that it might awaken their LQTS substrate, and there was then a delay in treating the anaphylactic reaction.”

People With SADS Conditions Should Follow These Recommendations

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Practice good hand hygiene. The best method for preventing contamination is hand-washing with soap for 20 seconds. Hand sanitizers can be used when soap-water is not available.

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Ensure you have your proper medications (e.g. beta-blockers) for at least 2 weeks. In the case that you fall ill, ensure you have over-the-counter medications (e.g. ibuprofen and acetaminophen) to manage symptoms associated with viral infections. Check with crediblemeds.org or brugadadrugs.org for information on medications that are safe to take with SADS conditions.

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Special Reminder for people with LQTS:
Several of the medicines now being tested for efficacy in the treatment of COVID-19 are on the list of drugs known to have a risk of Torsades de Pointes (TdP) arrhythmia. These include the antimalarials, chloroquine or hydroxychloroquine, that are being combined with azithromycin or with the antivirals, lopinavir/ritonavir. Each of these drugs alone can cause QT prolongation and chloroquine, hydroxychloroquine and azithromycin are on the CredibleMeds’ list of drugs known to cause TdP. It is hard to make a general recommendation about what to do because every case will be a risk/benefit assessment by your physician but we want to remind you to be sure your providers know of the heightened risk of these drugs in LQTS. More info here.

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Watch for symptoms and warning signs. If you feel like you are developing symptoms such as fever, cough, and shortness of breath, call your doctor.

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Avoid leisure travel for now.

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Have your flu vaccine.