All DSE

Quick links to our other sites.

Down Syndrome Research and Practice 6(3)

Debunking the pathological model - The functions of an Internet discussion group

Robert Jones, and Heledd Lewis

In recent years there has been a profusion of resources about Down syndrome available on the World Wide Web and for increasing numbers of people the internet is the resource first contacted when new information is required on a topic. The present paper examined the function of a discussion group which is used primarily by parents of people with Down syndrome. Qualitative research methodology (content analysis) was used to analyse the daily discussions over a 5 month period in 1998 (February to July) and over a 2-week follow up period six months later (January 1999). The analysis revealed themes of celebration, seeing the child before seeing the handicap, hope and optimism, a sense of purpose in life and of being like a family within this group.

Jones, R, and Lewis, H. (2001) Debunking the pathological model - The functions of an Internet discussion group. Down Syndrome Research and Practice, 6(3), 123-127.

Refractive errors and visual anomalies in Down syndrome

Joav Merrick, and Kenneth Koslowe

A comparatively high incidence of ocular and orbital abnormalities has been reported in persons with Down syndrome. Eighty six children (50% male, 50% female) with Down syndrome in several institutions for individuals with learning difficulties (age range 5-18 years, mean 12.5) were examined for visual impairment in order to relate the ocular impairment to the level of learning difficulty. 6% had mild, 7% moderate, 45% severe and 42% profound learning difficulty. 9% of the children had no refractive errors. A significant (P<0.01) positive correlation was found between progressive amounts of strabismus and ocular pathology with increasing amount of learning difficulty. On the other hand no correlation was found between refractive errors and the level of learning difficulty. Due to the significant number of ocular disorders found it is recommended that all children with Down syndrome should have an eye examination during the first six months of life and annually thereafter.

Merrick, J, and Koslowe, K. (2001) Refractive errors and visual anomalies in Down syndrome. Down Syndrome Research and Practice, 6(3), 131-133.

The relation between the psychological functioning of children with Down syndrome and their urine peptide levels and levels of serum antibodies to food proteins

Egil Nygaard, Karl Ludvig Reichelt, and Joseph Fagan

Aims: To investigate the relation between psychological functioning of subjects with Down syndrome, and their levels of urine peptide and serum antibodies to food proteins. Methods: 55 children with Down syndrome in a cross-sectional study. Psychological functioning was measured by the Stanford-Binet Intelligence Scale: Fourth Edition, McCarthy Scales of Children's Abilities and Fagan's computer based test of novelty preference. Results: The participants, and their siblings, were found to have significantly increased total urine peptide levels. There were no significant correlations between peptide levels and psychological functioning. Significantly increased levels of IgG activity to gliadin and gluten, and IgA activity to gliadin, gluten and casein were found. There were significant negative correlations (Spearman r=-0.13 to -0.51) between psychological functioning, and IgG and IgA activity to gliadin and gluten. Conclusions: A significant relation between antibodies to gluten and psychological functioning was documented. The mechanism and potential causal link are still unknown.

Nygaard, E, Ludvig Reichelt, K, and Fagan, J. (2001) The relation between the psychological functioning of children with Down syndrome and their urine peptide levels and levels of serum antibodies to food proteins. Down Syndrome Research and Practice, 6(3), 139-145.

Life be in it: Lifestyle choices for active leisure

Anne Jobling

For members of the community, participation in leisure, sports and recreation is an important lifestyle choice. Individuals with Down syndrome live in our community and they, too, are equally entitled to active lifestyle choices. Children, adolescents and adults with Down syndrome have a wide range of interests and, although reported trends indicate that their engagement in recreational activity is often sedentary and solitary in nature, other factors apart from the syndrome may account for this. Using a perception of difference perspective, this paper will examine certain aspects of their motor development, health and interactions with others which could be viewed as restrictive factors to their ability to participate in active leisure opportunities in the community. Program examples from Australia will be used to illustrate how a perception of difference which facilitates ability rather than disability across community based activities can enable a range of active leisure choices.

Jobling, A. (2001) Life be in it: Lifestyle choices for active leisure. Down Syndrome Research and Practice, 6(3), 117-122.

Characterisation of the somatic evolution of Portuguese children with Trisomy 21 - Preliminary results

Armando Fernandes, Ana Mourato, Mª Xavier, David Andrade, Cláudio Fernandes, and Miguel Palha

We present preliminary results of a cross-sectional study which had the following objectives: 1- to develop percentile curves of weight, height and head circumference of Portuguese children with Trisomy 21 from 0 to 48 months of age; 2- a comparison of the growth of children with Trisomy 21 with a control population of their siblings, and 3- a comparison between the growth of Portuguese and American children with Trisomy 21 (based on the data of Cronk et al). We conclude that: 1- there is growth delay (weight, height, head circumference) in the Portuguese children with Trisomy 21, in all of the parameters evaluated and in all age groups; 2- Portuguese children with Trisomy 21 present values similar to those obtained by Cronk et al until 24 months of age; 3- from the age of 30 months onward Portuguese children with Trisomy 21 were heavier and taller than American children with Trisomy 21. This supports the usefulness of percentile curves specifically for Portuguese children with Trisomy 21.

Fernandes, A, Mourato, A, Xavier, M, Andrade, D, Fernandes, C, and Palha, M. (2001) Characterisation of the somatic evolution of Portuguese children with Trisomy 21 - Preliminary results. Down Syndrome Research and Practice, 6(3), 134-138.

Quality of life - Ageing and Down syndrome

Roy Brown, Janet Taylor , and Brian Matthews

This article, based on pilot qualitative research, examines the quality of life of people with Down syndrome who are in the upper age bracket (45-70 years). Through use of a questionnaire, the current life experience and interests of a small group of individuals are noted, along with some of their perceptions concerning their past and present, including their views on the ageing process. Recommendations are made particularly in relation to the need to recognise the principles of variability, perception and choice, while providing support to encourage dignified and active lifestyles.

Brown, R, Taylor , J, and Matthews, B. (2001) Quality of life - Ageing and Down syndrome. Down Syndrome Research and Practice, 6(3), 111-116.

Down syndrome in Israel

Joav Merrick

The incidence of Down syndrome was studied in Jerusalem for the years 1964-1970 showing an overall incidence rate of 2.43 per 1,000 live births. A National Down Syndrome Register was established in 1978 and data on annual incidence and mortality rates from 1979-1997 is presented. The incidence in 1997 was 1.0 per 1,000 live births, but 2.32 per 1,000, when live births and terminated pregnancies are summed. Infant mortality has generally decreased in the past 20 years in Israel, and a decrease in infant mortality in Down syndrome has also been noted. This is due to better medical treatment and increased parental involvement in the care for infants with Down syndrome.

Merrick, J. (2001) Down syndrome in Israel. Down Syndrome Research and Practice, 6(3), 128-130.

Follow Us

Down Syndrome Education International logo Down Syndrome Education USA logo