New Guide Offers Road Map To IEP Process
Article Title: New Guide Offers Road Map To IEP Process
Author: Michelle Diament
Date of Publication: August 23, 2011
Bone Density
We rarely use Wikipedia as a resource, but this overview on bone density is quite well done. As with any medical issue or question, please consult your physician. The Wikipedia entry is a general discussion of the topic. It is not specifically related to X and Y Chromosome Variations. For individuals who are 47,XXY, untreated hypogonadism can lead to osteoporosis and osteopenia. Most benefit from testosterone replacement therapy (TRT). Those who identify as intersex or choose not to use TRT should seek competent medical help for alternative methods to preserve bone density.
Gender Considerations with 47,XXY
Authors: A.S. Herlihy, L. Gillam
Date of Publication: March 2011
www.ncbi.nlm.nih.gov/pubmed/21453406
International Journal of Andrology ｪ 2011 European Academy of Andrology, 1–2
A common genetic condition affecting males, Klinefelter syndrome (KS), is often described as ‘The Forgotten Syndrome’.Although the prevalence of KS has been estimated to be as high as 1 in 450 (Herlihy et al., in press.), between 50 and 70% of males are never diagnosed (Bojesen et al.,2003). Klinefelter et al., 1942 first described KS as a syndrome in males, characterized by tall stature with eunuchoidal body proportions, gynaecomastia, small testes,hypogonadism, azoospermia and increased FSH levels(Klinefelter et al., 1942). The cause of this syndrome was identified 17 years later as an additional X chromosome in males, resulting in a 47, XXY karyotype (Jacobs & Strong,1959). Since then, there have been many advances in research concerning the biomedical aspects of KS, in addition to the cognitive and neuropsychological features,providing a greater understanding of the variety of behavioural, learning and psychological difficulties that may be present (Bojesen & Gravholt, 2007).
Resource in Texas: Social Skills Classes for Children and Teens with Social Integration Differences
From their website description:
We are 100% Social & Life Skills
- We focus SOLELY on social skills training and learning of mainstream activities – for children and adolescents with social & learning deficits and autism spectrum disorders
- We’re serious about social behavior modification. We offer the quantity and quality of practice sessions necessary to effectuate real change
- We are your relentless persistence partner. Without a commitment to persistent practice, social skills will not be internalized
- We are the only one. There is no other program like us in Houston or its surrounding areas.
Challenge List
I had started to put together a list of challenges from our family experiences plus things I had read on the forums over the past few years and wanted to share it with the group. You may find this helpful in talking with teachers and health professionals and may want to add more things that are specific to your son.
Challenges that can be associated with 47,XXY
Available as an MS Excel File (This is preferable, because you can add your notes or comments to it easily)
Also available as a PDF
-Gary Glissman
Testosterone Deficiency
Article Title: Testosterone Deficiency
Author: E. Barry Gordon, MD
Date of Publication: 2006
Most people have heard of testosterone, but very few are aware of the diseases resulting from the hormone’s deficiency. This situation is not surprising. Testosterone is frequently in the news media either because of its energizing effect on our sexuality or, more commonly, because of its illegal overuse to enhance athletic performance. Because of this the hormone has taken on something of a sordid, sleazy, even illegal, aura.
The reason very few people are aware of the disease of testosterone deficiency is that no one talks about it. It’s been swept under the medical rug and kept there. Even most of the medical community know very little, if anything, about the scope and severity of this disease. Many don’t want to know about it. They are frightened by the myths and don’t want to be associated with the popular perceptions.
Triple X syndrome: a review of the literature
Article Title: Triple X syndrome: a review of the literature
Authors: Otter, Schrander-Stumpel, and Curfs
Date of Publication: July 1, 2009
“Triple X syndrome is a syndrome with a high level of variety in the physical and behavioural phenotype. Triple X syndrome is not rare, but it is often undiagnosed. Notwithstanding the relatively high prevalence of triple X syndrome, there are many issues yet to be studied in physical and behavioural development up to old age.”
“Above all, further study is needed to establish evidence-based treatment and support protocols in physical treatments (endocrinological treatment, fertility issues and treatment in cases with EEG anomalies in relation to behaviour, etc.), educational support, psychiatric diagnosis and treatment, and psychological treatment, such as psychotherapy and family therapy.”
AAP: Guideline Calls for Pre-K ADHD Evaluation
Article Title: AAP: Guideline Calls for Pre-K ADHD Evaluation
Author: Charles Bankhead
Date of Publication: October 16, 2011
Primary care physicians should begin evaluating children for attention deficit hyperactivity disorder (ADHD) at age 4 and continue through age 18, according to a new clinical guideline from the American Academy of Pediatrics.
Read more
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Tantrum Tamer: New Ways Parents Can Stop Bad Behavior
Title: Tantrum Tamer: New Ways Parents Can Stop Bad Behavior
Author: Shirley S. Wang
Date of Publication: November 8, 2011
Understanding and Modifying the Behavior of Children with X and Y Chromosome Variations: A Guide for Parents and Professionals
Article Title: Understanding and Modifying the Behavior of Boys with XXYY: A Guide for Parents and Professionals
Author: Karen Riley, PhD
Date of Publication: 2007
This paper was originally commissioned by the XXYY Project. At the urging of Dr. Riley, the XXYY Project has generously shared their valuable “Behavior Paper” with AXYS.
While this paper focuses on the behavioral profile of XXYY, it will prove very valuable for any child who is experiencing behavior issues. This paper provides step-by-step instructions for coping with behavioral issues that many children with X and Y chromosome variations may experience to one degree or another.
We urge you to review this document and generally substitute your child’s condition for XXYY. In most cases, the fit is very good.
Once again, we offer our sincere thanks to the XXYY Project for sharing this important work with the AXYS community.