Want to better understand better how the COVID-19 pandemic may impact children and adults with genetic epilepsy and developmental and epileptic encephalopathies (DEEs)? Listen to these tips and information from Prof Ingrid Scheffer.

This bonus episode of SCN2A Insights is produced by Genetic Epilepsy Team Australia for the benefit of those with genetic epilepsy and DEEs and their families. 

You can listen to and subscribe to the SCN2A Insights podcast via Apple Podcasts,  Spotify, and Google Podcasts or in your podcast app.

Guest interview:

Laureate Professor Ingrid Scheffer has pioneered and led the fields of epilepsy genetics and epilepsy classification over 25 years in her work as a paediatric neurologist and epileptologist at the University of Melbourne, Austin Health and the Royal Children’s Hospital. With Professor Samuel Berkovic and molecular geneticists, she identified the first gene for epilepsy and subsequently discovered many more. Now she is building on her work defining the genetic basis of epilepsy to develop precision treatments for these serious diseases.

Professor Scheffer’s website has more information on her research and achievements.

Regular Hosts:

Ms Kris Pierce RN MHSc MWellness, is a rare disease advocate and mother to Will who has SCN2A. Kris has held a range of board, project management, advocate and consumer representative roles and has been instrumental in working with local, state and federal governments to secure funding for multi-million dollar projects. Kris is highly skilled in building teams to work together collaboratively and is a co-founder of Genetic Epilepsy Team Australia (GETA) and SCN2A Australia, and a RARE Global Advocacy Leadership Council member.

Follow Kris on LinkedIn or Twitter.

Dr David Cunnington is a sleep physician and father to Will who has SCN2A. He is director of Melbourne Sleep Disorders Centre, and co-founder and contributor to SleepHub. David trained in sleep medicine both in Australia and at Harvard Medical School in the United States. David’s clinical practice covers all areas of sleep medicine and he is actively involved in training health professionals in sleep. David is a regular commentator on sleep, both in traditional and social media.
Follow David’s posts on sleep on Facebook or Twitter


Welcome to SCN2A insights. Bringing you the latest research and clinical updates on SCN2A and genetic epilepsy from around the world.

So welcome to this bonus episode of SCN2A Insights which we’re doing as part of our role with Genetic Epilepsy Team Australia (GETA) to try and provide information for families of what to do with the current COVID-19 pandemic the world is facing.

Welcome Kris. Thank you. Yes it’s a concern for a lot of our families for a whole rangeof reasons. What to do if you get it? Where to go? What supports? So it is really important for us to get Ingrid Scheffer in and have a chat about it and get some advice from the medical team about what our families should be doing.

So to better understand what we should do around COVID-19 for our children andfamilies, Ingrid Scheffer was kind enough to talk to us and many of you may know of or have heard of Ingrid and her research. Ingrid is a Professor at the University of Melbourne, a paediatric neurologist with a particular interest in epilepsy and seen as world expert and leader in this field.

Thanks Ingrid for joining us tonight and helping our community understand whatCOVID-19 is and the impact it might have.

Oh it’s a pleasure. It’s quite a frightening time for the whole community I think withthe pandemic that we’re seeing.

Yes and there’s a lot of uncertainty so I think this podcast will be great for families tohave better insight into what they should be doing and focusing on. So what are thethings families and children can do to reduce the risk of catching COVID-19?

Public messaging about this has been pretty clear. We need to be very careful about washing our hands, washing them often and washing them well. When we touch other people, when we touch surfaces, after we eat and drink, a lot more hand washing I think than we usually do. It’s good if we can try and keep our hands away from our mouths. That’s not always possible and some of our children may be prone to doing that. The other major message I think is social distancing. So not going to attend meetings with large groups of people. When you are in the room with other people trying to keep one and a half metres space between you and other people. I mean we have to have contact with others. That’s what daily life is about, but trying to be very sensible about that and not going to shopping centres or other places where you might be around a lot of people and in much closer contact.

So do you think children with developmental and epileptic encephalopathies are morelikely to catch COVID-19 compared to the general population?

No I don’t think children or adults with developmental and epileptic encephalopathiesare more likely to catch COVID-19 compared to the rest of us. However I think thatwe’re all at high risk of catching it eventually because it seems to be very infectious.

So what about if a child with a developmental and epileptic encephalopathy hasCOVID-19? Are they less able to cope with the illness compared to other children?

Well I was actually quite worried about this group of children because some of them tend to have seizures with fever and COVID-19 is often associated with a fever. But I heard very recently some good news about this from other centers such as Italy and New York where they’ve had quite a lot of patients already and they do not see any exacerbation any worsening of seizures in this group. Often this lung disease is treated with steroids and they may actually be protective for the epilepsy. I don’t think we really know why but so far epilepsy doesn’t seem to be being made worse. On the other hand though there are patients with underlying lung disease it may be because they’re not very mobile it may be because they have a scoliosis or a bend in their spine. And those patients with underlying lung disease I would still be concerned about that they would be at an increased risk of chest infections.

Are there ways to help children or adults cope better with a fever or a febrile illness?

The strategies that parents have to use here just the normal ones for fever. So that isgiving paracetamol regularly measuring fever and of course adequate hydration andkeeping them close by. Watching your child very carefully in case seizures do happenin the pandemic unfortunately that we’re facing.

It’s likely that the health care resources are going to be quite stretched. What should families do if children do become unwell?

Families are the experts on their own children so they know when to worry and if youas a mother, father or carer know your child really well then you know if things aren’t right and if you’re worried then you should be taking them to the emergency department. Don’t worry if they’re crowded, if you’re worried you’ll probably quite right to be concerned and you need to seek medical advice and an emergency department is equipped to handle a major problem should your child have prolonged seizure.

Families at risk can go to the emergency department if they’re worried. That’sprobably the best option. Of course they’re going to be worried about the systembeing so overwhelmed. Are there other options for families if they can’t get intohospital or they feel that that’s not the best place for them to go?

Well I think there are certainly other other options. The first thing to say is that in thecase of a patient with a developmental and epileptic encephalopathy remember oneof your key health professional professionals will be a neurologist and they will not beat the frontline in the emergency department. In general that will be the emergencyphysicians and infectious diseases physicians. So I think you shouldn’t be tooconcerned about trying to contact your neurologist or your pediatrician. There areother options. Australia is making provision for virtual consultations so that you cancall your doctor and have a consultation or even better you can have a videoconference with them via Skype or zoom or one of those different programs. This means you can actually have a face to face consultation even though it’s not in person.Now I guess it is worth pointing out that in person is always the best. But as COVID-19 comes through there may be too many risks associated with that because you’ll be in the hospital in an environment where there will be people with COVID-19 . So from that point of view a virtual consultation may be best. So if you are worried advice is to call your main doctor that looks after your child, be that the pediatrician or the pediatric neurologist and set up a time to have a chat with them.

Ingrid have you heard any concerns about availability of specialized medications suchas anti epileptics.

Not to my knowledge. I don’t think there are any concerns about running out of medication. It’s a funny time in which we live where people are stockpiling toilet paper but at the moment I would not say that you need to stockpile your anti-epileptic drugs.Having said that I would always have a month or two in the cupboard. So it doesn’tmean you should be running out on a daily basis but there’s no sudden emergency where you need to get six months into your cupboard.

So should our children get additional vaccinations?

The influenza vaccine is about to be released in Australia as we head into the winter. Ialways recommend flu vaccination for my patients with developmental and epileptic encephalopathies . We know they are at risk of becoming more unwell with seizuresand being more at risk of pneumonia with influenza. So I do think they should have fluvaccination because they’re more vulnerable I’d try and get in early and make sureyou get the flu vaccine for your child. Otherwise their vaccinations should generally beup to date, one would hope and then there are no other vaccinations they need to get.

Thanks very much for those insights Ingrid. That’s been really helpful.

So David what were the take homes from Ingrid’s messages.

It was really helpful information from Ingrid but I think up front those take homemessages about the things we can do to prevent the spread of COVID-19 and reduceour chances of catching COVID-19 . Making sure we wash our hands, being aware of not touching our face if possible, and maintaining social distancing.

Obviously we try our best with our children and we know that there are some  extra challenges with our kids who who have intellectual disabilities and autism but we just  do the best we can and try and protect not only them but ourselves and the rest of the family by trying to implement these strategies.

So I hope you find the strategies in this podcast episode helpful. We’ll put links tosome of the important websites with good quality information about COVID-19 andsteps to take in the show notes .

If you’ve got questions please send them through to us because we really want tomake sure that the information that’s coming out to our families is verified and that we’re getting it straight from the medical staff. So if you do have any questions or concerns please send them through to us and we’ll do our best to get someone to talk to those issues.

Where’s the best place for people to send those to Kris?

On our social media page for Genetic Epilepsy Team Australia, message on the page or you can message us through Messenger.

Thanks a lot. Thanks a lot for joining us today.

This podcast is not intended as a substitute for your own independent health professionals’ advice diagnosis or treatment. Always seek the advice of your physician or other qualified health provider within your country or place of residency with any questions you may have regarding a medical condition.