Appendix 08 - DS specific Growth charts and Inserts for red book

Personal Child Health Record (PCHR)

Note: Children with significant cardiac disease or other major pathology were excluded from the study population. In addition, data for those born before 37 completed weeks were excluded up to age two. The charts are therefore representative of healthy children with Down Syndrome living in the UK and Republic of Ireland.  The charts were commissioned by the UK Down Syndrome Medical Interest Group (DSMIG). 

As many older children with Down Syndrome are overweight we have included on the charts a weight-height BMI conversion chart appropriate for children with Down Syndrome age over 2 years. 

Further Information

RCPCH/DSMIG Growth Chart Fact Sheet – 2011
Explains why we need special charts for children with Down Syndrome and how to use the charts to monitor children’s growth, including premature babies and older infants and children. It also includes some advice on growth in puberty and over-weight and obesity.

DSMIG Guidelines Basic Medical Surveillance Essential for people with Down Syndrome: Growth
Gives more information about growth monitoring for children with Down Syndrome and is part of a set of Medical Surveillance Guidelines for people with Down Syndrome produced by the Down Syndrome Medical Interest Group.

Ordering - Copies of the Growth Charts can be ordered from Harlow Printing.  All other enquiries about obtaining the charts should be directed to:  Harlow Printing Ltd, Maxwell Street, South Shields, Tyne & Wear NE33 4PU. Tel: 0191 455 4286. Fax: 0191 427 0195.Email: sales@harlowprinting.co.uk

Electronic Growth Charts - DSMIG has been designated by the MRC as sub-licensee for the data.  Anyone wishing to produce an electronic chart needs a licence from DSMIG to do so.

Individuals/organisations wishing to produce an electronic Down Syndrome growth chart can download an Licence Application Questionnaire 2019 and  Licence Charges 2018.  

Email: info@dsmig.org.uk for further information.

Growth Charts – DSMIG

https://www.healthforallchildren.com/wp-content/uploads/2013/04/A5-Downs-Instrucs-chartsfull-copy.pdf

App for parents and professionals to plot growth in Down Syndrome: http://www.medcalc.com/growth/

Personal Child Health Record (PCHR):  The fifth edition of this 30 page insert for the ‘Red Book’ was launched in January 2020. It contains additional information for parents and professionals that will help them maintain the health and well-being of babies born with Down Syndrome.

Areas covered are:

  • General information

  • Expected developmental progress

  • Possible health problems

  • Suggested schedule of health checks

  • Advice about immunisation, feeding and growth

  • Down specific growth charts

  • Sources of additional help and advice

The 2020 fifth edition can be downloaded here:

Personal Child Health Record (PCHR) – DSMIG

PCHR for babies who have Down syndrome

Individual copies for the red book can be obtained from the Down syndrome association: 0333 1212 300

Ordering - Copies of the insert can be ordered from Harlow Printing.  All other enquiries about obtaining the insert should be directed to:  Harlow Printing Ltd, Maxwell Street, South Shields, Tyne & Wear NE33 4PU. Tel: 0191 455 4286. Fax: 0191 427 0195.  Email: sales@harlowprinting.co.uk

E-redbook

eRedbook

The red book (PCHR) is going digital – there is an app available for parents/carers and professionals on both Apple Store and Google Play.  The DS inserts are currently paper versions but will be adapted for online access to be incorporated into the digital e-version (Nov 2020).