Growing concerns regarding late presentation for medical help for non-COVID related illness

There is growing concern that parents of  children who develop medical problems during the current Covid-19 epidemic may not be accessing medical advice early enough and as a result are becoming seriously unwell  with non-COVID related illness, which is amenable to treatment.

This may be particularly relevant for children ( and adults ) with Down syndrome who already have or may be vulnerable to a range of medical  problems that are associated with Down syndrome .

Parents and Carers should be reminded that if they are worried about their child they should seek prompt medical advice via their GP , or 111 or in an emergency their local hospital Emergency Department .

For further information please see the COVID-19 Statement on delayed presentations from the Royal College of Paediatrics and Child Health.

Updated 4.4.20

Covid-19 and Down Syndrome

Information about the new Coronavirus pandemic , how it may affect people who have Down syndrome and resources for health professionals and families is now available.

Covid-19 is a a newly identified disease, caused by a type of coronavirus not previously seen in humans. It primarily affects the respiratory system.

There is no evidence at the moment of people who have Down syndrome being at particular risk of this coronavirus , though of course people who have Down syndrome may be more at risk from infections generally and respiratory infections in particular.However there is evidence to suggest it may pose a greater risk to those with other chronic health conditions, including pre-existing respiratory conditions, heart disease, diabetes, and immunodeficiency. A number of children and adults who have Down syndrome will fall within these higher risk groups.The advice offered should be case specific, and can be guided by advice offered by the speciality groups relevant to the different conditions . Speciality information sheets are available on the Great Ormond Street Hospital website .

For people with Down syndrome who do not have additional health conditions advice on avoiding exposure to infection should be as for the general population and include handwashing, avoiding exposure to those known to be affected and social isolation. Details on NHS website

It is also important to maximise other measures recommended to minimise the risk of infections including routine and additional immunisations, and treatment of other medical problems that may predispose to infection.

As the Covid-19 pandemic develops we will develop a greater understanding of how the disease affects different groups of people , including those with other health conditions and for those who have Down syndrome. We will endeavour to keep health professional colleagues working with people who have  Down syndrome with information as it becomes available. Below we have collected some resources that we feel are useful .

General advice

Up to date advice is available via the NHS website. 

Advice also available via UK Government website

 

Advice for Health professionals

Comprehensive advice has been prepared by the Royal College of Paediatrics and Child Health COVID-19 guidance for paediatric services.

Resources for Community Paediatricians are available on the British Association for Community Child Health website.

 

Advice for parents, carers and people who have Down syndrome

There is useful information on the website of the Down’s Syndrome Association ( DSA) which includes an easy read guide about coronavirus , and advice on hand washing.

There are two recent  DSA Journal articles Preventing infection in children with Down’s syndrome and Recognition of Serious Illness in Children with Down’s syndrome.

Advice on infections is also included in the new 2020 version of the Personal Child Health Record DS insert on pages 9 and 16.

Similar useful information is also available on Down Syndrome Ireland website

General information about Coronavirus for parents can be found here

Wide ranging advice, with links to national and regional resources , and  helplines has been compiled by the Disabled Children’s Partnership

 

If you have any further suggestions of information about COVID-19 or useful resources we should put on the website please email info@dsmig.org.uk

 

Last update 5.4.20

The RCPCH annual meeting which was due to be held 28-30 April 2020 has been postponed due to COVID -19

Please check back here or www.rcpch.ac.uk for future plans

The RCPCH annual meeting which was due to be held 28-30 April 2020 has been postponed due to COVID -19.

The session that that DSMIG  was to run jointly with  the British Association for  Community Child Health and the British Paediatric Respiratory Society , focussing on respiratory issues in Down Syndrome will there for not be going ahead on 29th April 2020.

We hope that this session will be rearranged as part of a  future RCPCH meeting.Please check back here or  www.rcpch.ac.uk for future plans

New book on Breastfeeding and Down Syndrome

Julia’s Way, a non-profit organisation, have brought out Breastfeeding and Down Syndrome: a comprehensive guide for mothers and medical professionals.  The book aims to be evidence based and has been reviewed by medical experts.  Electronic copies of the book are free to download and printed copies are available to purchase.

 

 

New Book ! Down Syndrome – Current Perspectives

ds-current-perspectives-book-coverDown Syndrome

Current Perspectives

Edited by Richard Newton , Shiela Puri and Liz Marder

This book provides doctors and other health professionals with the information they need to address the challenges that can present in the management of Down syndrome. Chapters have been written by a number of internationally respected clinicians with a special interest in Down syndrome, including members of DSMIG UK and Ireland www.dsmig.org.uk with contributions from the Down’s Syndrome Association www.downs-syndrome.org.uk. Chapters include discussion of comorbidities, with background information and advice on assessment and management ,as well as the underlying biology and new developments in molecular genetics. Practical examples and case scenarios are included.

Available from http://www.mackeith.co.uk or from Amazon

Product details:

Hardcover: 288 pages

Publisher: MacKeith Press (20 March 2015)

Language: English

ISBN-10: 1909962473

ISBN-13: 978-190996247