21 links for Down Syndrome Awareness Week 2012 (2)

Most people with Down syndrome will enjoy good health, as long as they have access to a good standard of living and experienced, knowledgeable health care.  A number of health conditions do occur more often amongst people with Down syndrome (although some will have none  of them), and many of them are preventable and/or manageable. Some rarer health conditions are also rare amongst people with Down syndrome, but still occur more commonly than in the wider population. For a few people, their health needs are complex and require more vigilance.

Today's three links focus on health conditions - two rare but significant disorders that can cause great concern, and health care guidelines that can help promote high quality health care at all ages.

• Infantile spasms (West syndrome) occur in a small percentage of children with Down syndrome and can profoundly affect development until successfully treated. Noah's Mom is a peadiatrician and the mother of a child born with Down syndrome. She enjoys helping people to understand Down syndrome in a clear and easy way, and sharing what she has learned along the way. This blog post is a detailed useful post on infantile spasms. A further resource will become available when the scheduled Boston Children's Hospital presentation on infantile spasms is posted online after the December event. Information is also available from Epilespy Action Australia, and of course from your own paediatric neurologist.

• Dr Brian Chicoine, Co-director of the Adult Down Syndrome Center's medical clinic in suburban Chicago discusses a rare, but worrying and puzzling problem identified in a few young people with Down syndrome, the current state of knowledge, and a research project might shed more light on it, in this recent post: Decline in a young person and/or Hashimoto's Encephalopathy.

• Health care guidelines specifically designed to address the potential needs of people with Down syndrome can be very valuable to your general practitioner and for families to keep on hand to share as needed.  Needs are likely to change over time, so guidelines commonly address different age groups, so we think it is reasonable to actually provide two links here:  this article by Dr Jane Tracy and Rachel Carling-Jennings, published in our journal Voice earlier in 2012 considers health matters to consider for adults with Down syndrome, while these guidelines updated by the American Academy of Pediatrics in 2011 make recommendations for children's health care.  The AAP guidelines are summarised here.

All 21 links for Down Syndrome Awareness Week 2012 posts