NEW Guidelines on thyroid disorder in children and young people with Down syndrome: Surveillance and when to initiate treatment

NEW Guidelines on thyroid disorder in children and young people with Down syndrome: Surveillance and when to initiate treatment now available

Further details also available on Thyroid disorder topic page

The new thyroid guidelines  were officially launched on Friday May 22nd 2020

The event  also introduced the 2020 update of the Parent Held Child Health Record insert.



DSMIG AGM and Winter meeting 2020

There will be changes to the DSMIG winter meeting and AGM that had been planned for October 2020

We WILL be having an educational meeting at a similar time , but changes to other meetings due to the Covid-19 outbreak means that the date , format and programme are still to be finalised .

We are also required to have our AGM within 15 months of the previous i.e. before February 2021.

Details of both will be posted here , and circulated to members as soon as they are available .

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( RCPCH ).

A poster has been produced by the RCPCH advising parents on when they should seek medical help during the Covid 19 epidemic  – Advice for parents when child unwell or injured  poster


Updated 11.4.20

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.
Those at higher risk may be advised to “shield “ or socially isolate to minimise risk of infection. COVID -19 shielding advice for children and young people has been written by the RCPCH. This describes which children should be included in the highest risk groups.

The majority of children and young people with Down syndrome will not be in those high risk groups and should follow  advice on avoiding exposure to infection as for the general population which  includes handwashing, use of face masks, avoiding exposure to those known to be affected and social distancing . 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 .

The T21 Research Society is undertaking an international study looking at the effects of COVID-19 in people who have Down syndrome.  DSMIG is supporting this study.

The study is collating data from across the globe and aim to update the results every 4-8 weeks. Please follow the link  for updates

The three main clinical research questions are:

1.      Whether individuals with Down syndrome are more vulnerable to severe outcomes because of co-occurring conditions

2.      Whether those with Down syndrome are at an increased risk for complications arising in the context of SARS-CoV-2 infection

3.      Whether there are atypical responses to treatments of COVID-19 among individuals with Down syndrome, including their response to future vaccines?


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.

NHS England has produced a Clinical guide for front line staff to support the management of patients with a learning disability, autism or both during the coronavirus pandemic – relevant to all clinical specialities.

Article on Guidance for the Treatment and Management of COVID-19 Among People with Intellectual Disabilities

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

Up-to-date Government guidance and information for practitioners and parents and carers on issues related to education, health and social care to help support  disabled children during the Coronavirus outbreak has been collated by the Council For Disabled Children

Include Me Too have developed COVID 19 Hospital Communication Passport for disabled children, young people & adults .Providing vital information to support their safety,dignity, access,communication,sensory, physical & personal care needs.

If you have any further suggestions of information about COVID-19 or useful resources we should put on the website please email


Last update 3.7.20

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 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 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.