Coronavirus / advice from TOFS website

27 March 2020

Thanks a lot to TOFS for this article

We understand that many people born with EA/TEF (and families of those born with the conditions) are concerned about the fast-evolving situation caused by the coronavirus.

What is COVID-19?

COVID-19 is the new respiratory illness which the coronavirus causes, and it has now been described by the World Health Organisation as a pandemic.

Symptoms of COVID-19 will be mild for many, but are most severe in those with existing lung conditions.  There is huge media coverage of the pandemic, but we advise looking at these trusted websites for the facts.

Further information:

Are EA patients at greater risk?

Whilst many EA/TEF patients are used to coping with respiratory illness, they have an increased risk from all types of flu and viruses, including COVID-19.  Our understanding is that younger people are generally coping well, however not all EA patients are the same and we must all exercise common sense to help protect ourselves and control spread of the virus.

 Whilst the virus seems to have a worse effect on adults than children, we all have a duty to protect the vulnerable.

Prof Alyn Morice, respiratory expert from Hull UK, tells us ‘The advice depends very much on the status of the patient. Someone who has just a chronic dry cough but is otherwise well there is no need to take any other measures 

If people have damaged lungs, bronchiectasis or repeated “chest infections”– in reality aspiration events then I would regard them as a vulnerable group and the current advice is that they should consider self- isolation for the duration.’

How long should we self-isolate for?

If you/your child is in the vulnerable category (see above) then you should self-isolate for the foreseeable future.  Current rules allow for one walk (or alternative form of exercise) per day, observing two metre distance from others.

Trust your instincts

It has been found that children are generally coping well with the virus, however due to the complex nature of EA/TEF and VACTERL it is important to keep an eye on symptoms and follow your instincts.  If a call to emergency service is required, be sure to detail past respiratory issues and surgical history.

Should we attend routine hospital appointments?

Hospitals have differing policies in relation to this, and this is something that will change in the weeks ahead.  Currently some are changing appointments to telephone consultations instead, some are postponing, and some seem to be going ahead as normal.  We want to avoid attending hospital unless necessary just now, so our advice is to ring ahead and doublecheck.

What to do if you or your EA child develops symptoms?

Symptoms of COVID-19 are a cough, high temperature and shortness of breath that can lead to pneumonia.

Current  advice is for anyone (including children) with symptoms such as a new, continuous cough or a high temperature to stay at home for seven days, (if you live alone; 14 days if you live with others) even if the symptoms are mild.  After this time, if the patient is becoming more unwell or has not recovered, you should use your national emergency service.

Current medical advice is that the best chance of getting over the virus for those with underlying chest issues is to get your chest as healthy as possible.  For EA patient this means taking prescribed antireflux treatment regularly.  This will reduce the risk of reflux irritating the airways.  If you are prescribed inhalers, it is particularly important to take your preventative inhaler regularly (usually a brown/steroid inhaler) as this settles airway swelling and reactivity.

You can help control the spread of the virus by maintaining good hygiene, such as washing hands thoroughly and regularly and disposing of tissues that have been sneezed/coughed in to.  Do not touch eyes, nose or mouth if your hands are not clean.  Avoiding areas of over crowding could be beneficial. Current advice is to avoid travel to known high-incident areas, or countries.

Look after yourself

Whilst social distancing or in self-isolation it is important to take time to consider your own mental health. Looking after your own emotional and physical well being can help to make this period feel less stressful and help you to develop your own coping mechanisms.

Try to maintain regular routines as much as possible, this will help you and your family maintain a sense of normality. You can keep contact with friends and loved ones by using social media and video calls, these are great ways to give yourself something in your day to really look forward to. Encourage children to play, learn and explore through a range of creative activities in order to give them a positive outcome during this time and have a focus for their own worries.

Taking regular exercise can have a wealth of positive effects on your mental health, if you are not in isolation you can go for a walk or run, this can be done with family members living in the same house and make sure you maintain a two metre distance from others. There are also many online exercise programmes that you can follow to help you stay active.

Try to keep your mind active by being creative, reading, listening to music, doing a crossword, keeping a journal or getting crafty around the home – find something that works for you.

Try to avoid watching, reading or listening to the news too frequently, as this can be a source of great anxiety. Seek information only to help protect yourself and your loved ones or to get updates on Covid-19 once or twice a day from trusted sources. Limiting this will help to ensure that you are getting accurate information.

You can find some useful information about looking after your mental health during this time from the following websites:

Every Mind Matters

Guidance on Shielding

WHO Mental Health Guidance

 

Extract from TOFS website

 

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