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Down Syndrome NSW
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Friday, 30 October 2015

Health news, information and resources

Bernadette S Zemel et al, Pediatrics, Vol 136, No 5, November 2015

Children with Down syndrome (DS) have lower birth weights and grow more slowly than children without DS. Advances in and increased access to medical care have improved the health and well-being of individuals with DS; however, it is unknown whether their growth has also improved. Our objective was to develop new growth charts for children with DS and compare them to older charts from the United States and more contemporary charts from the United Kingdom ...
  • The full text of the research report is free to download as a .pdf file. High resolution images of the graphs are available online under the 'figures and data' tab here.
Talking to the Doctor
Down Syndrome Program, Massachusetts General Hospital for Children, October 2015
Social story about talking to a doctor about feelings, and asking/answering questions with a doctor.

Neck Instability
Down's Syndrome (UK), 16th October 2015
We thought we would write a blog piece to raise awareness of neck instability in people with Down’s syndrome as it is a subject that sometimes causes worry for parents and professionals alike. Callers to our Helpline quite often ask whether or not children should take part in particular physical activities such as trampolining. Before we carry on with the blog piece we must stress we don’t want to cause a rush to remove children and adults from PE, DSActive sessions and the gym. The aim of this blog piece is to inform and not to cause alarm so please read through to the end ...

Down Syndrome Program Reflects Transition Effort
Kara Baskin, MassGeneral Magazine, June 2015
At the MassGeneral Hospital for Children (MGHfC), Ben Majewski opens the door to the waiting room at the Down Syndrome Adolescent & Young Adult Clinic. “Stacy?” he grins, greeting a teenage patient. He ushers Stacy and her family into a treatment room with plans to return shortly for more discussion ...

Mr. Majewski isn’t a doctor. The 24-year-old, who has Down syndrome, is a resource specialist with the clinic, which helps patients aged 13 to 21 years transition from pediatric to adult care. The clinic, housed within the MGHfC Division of Genetics, also works with patients on achieving milestones such as independent living and offers family support on topics like healthy eating, sleeping, working and dating ...

My Child Has a Learning Disability - How Do I Prepare Her for a Hospital Stay?
Stephanie Nimmo, Huffington Post UK, 14th October 2015
... We know she will be in theatre for around seven or more hours, she will probably spend some time in intensive care afterwards being stabilised , the rest is all uncharted territory but we know she will be in for a long stay in hospital as she recovers and we find a regimen that enables us to look after her at home.

How do you prepare your child for something like this? Especially when, as in Daisy's case, she has a learning disability. Here's my advice to anyone with a child with complex needs facing an impending hospital stay, it's what has worked for us as we support Daisy through these traumatic and stressful times ...

I Can Quit Facilitator's Manual
Centre for Developmental Disability Health, Monash University, 2007
While smoking is not documented as a common problem for people with Down syndrome, it is not unknown. This program was first developed in 1995, updated in 2007 and is now available online.

Antipsychotic Drugs Often Given to people with Intellectual Disability in Absence of Mental Illness
Scientific American, 2nd September 2015
Antipsychotic drugs are widely used to blunt aggressive behaviour in people with intellectual disability who have no history of psychosocial disability, a UK survey of medical records finds, even though the medicines may not have a calming effect. The finding is worrisome because antipsychotic drugs can cause severe side effects such as obesity or diabetes ...

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