Special Needs Library Houston

"Parents of children with special needs know how difficult it is to find the time to locate the most appropriate resources for their family, whether it’s financial aid information, specialized and donated products, therapies, advocates and lawyers to help with the public education system, recreational activities, or other needs for their family. That is why most of us have turned to our informal networks of friends and caregivers to get this information. One group of families decided that it would be much better to expand this network through the Internet, and this website is the result."

http://www.specialneedslibrary.org/

Editors note: I can only tell parents and patients about my experience and what the books tell me about childhood neurologic. Parent networks and libraries such as this one keep us informed on the day-to-day operational facts and helpful hints. I recommend this resource

Scholarship Program Available

UCB, Inc. will award 40 one-time $5,000 scholarships in 2010 to people with epilepsy and family members or caregivers of people with epilepsy. To download a copy of the scholarship application, go to www.UCBepilepsyscholarship.com

To apply, you must certify that you are:
A U.S. citizen and/or legal and permanent resident of the United States
A person with epilepsy or a family member/caregiver of a person with epilepsy
Seeking an undergraduate or graduate degree
A student who demonstrates academic achievement, possesses a strong record of participation in activities outside of school, and serves as a positive role model
Graduating from high school in 2010 or have already graduated from high school
Enrolled in, or awaiting acceptance from, a United States-based institution of higher education for fall semester 2010
The completed application must be postmarked by April 23, 2010. Scholarship winners will be notified in August.
For additional information about The UCB Family Epilepsy Scholarship Program™, please contact: Hudson Medical Communications, Phone: 1-866-825-1920, E-mail: questions@hudsonmc.com
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Fire safety plans for families with children who have autism

Know My Fire Safety Plan
Children with autism may be less able to help themselves than other children in a fire emergency. It is difficult to predict how a child with autism will behave in a stressful situation. Advance preparation is critical. This fire safety social story – a short, personalized story that breaks down the important points into easy-to-follow steps – is designed to teach children with autism spectrum disorder what to do if the smoke alarm sounds. It can also be helpful for children with other developmental disabilities. Practice your fire safety plan with your children. Then read this story with them. The story is divided into sections. It can be read all at once or a little at a time depending on the requirements of the child

http://www.nfpa.org/itemDetail.asp?categoryID=1953&itemID=46172&URL=Safety%20Information/For%20consumers/People%20with%20disabilities/Autism&cookie%5Ftest=1

Autism Consortium study in Pediatrics shows CMA finds more genetic abnormalities than current tests

Editorial Note: This news is exciting in that it has hit the main press and that novel geneteic changes of uncertain significance are mentioned..

1) My clinical experience is consistent with these findings. I have been using microarray and newer standardized tests for 4 years. The microarray methodology keeps changing too. This year's test is better than the one that was available four years ago.

2) While highly provocative to those of us who follow the science, don't get too immediately excited about the practical implications of the copy number changes. The two copy number changes below appear to be recurrent but not linked to a known condition. If you search 16p11.2 on pubmed, you find links to epilepsy, obesity ovarian failure, schizophrenia and many more conditions. Single genes can be involved in widely different processes in development and everyday biological functions.

"With the exception of recurrent deletion and duplication of chromosome 16p11.2 and 15q13.2q13.3, most copy-number changes were unique or identified in only a small subset of patients."

In the end, this is a story that is being written every day and the truth is that we don't know what the ending will be.

Autism Consortium study in Pediatrics shows CMA finds more genetic abnormalities than current tests

Consortium recommends CMA be adopted as first-line diagnostic

The study, a collaboration between the Autism Consortium and Children's Hospital Boston, led by Consortium members Bai-Lin Wu, David Miller, Kira Dies, and Yiping Shen, examined 933 families (children and parents) who received clinical genetic testing for a diagnosis of Autism Spectrum Disorder (ASD) between January 2006 and December 2008. The researchers compared the findings from three clinical genetic tests: G-banded karyotype and fragile X testing, the current standard battery of genetic testing, and chromosomal microarray analysis, for which testing guidelines have not yet been established. Chromosomal microarray analysis is similar to a karyotype, but can find much smaller chromosomal deletions and duplications.

The results showed that chromosomal microarray analysis identified more genetic abnormalities associated with autism than the standard testing methods combined:

• Standard testing method G-banded karyotype testing yielded abnormal results in 19/852 patients (2.23%)
• Standard testing method Fragile X testing results were abnormal in 4/861 patients (0.46%)
• In contrast, chromosomal microarray analysis (CMA) identified deletions or duplications in 154/848 (18.2%) patients and 59/848 (7.0%) were clearly abnormal.
• As a result, chromosomal microarray was better than a karyotype for all but a small number of patients with balanced rearrangements, and those were not necessarily a cause of ASD.
• 
  

http://pediatrics.aappublications.org/cgi/content/abstract/peds.2009-1684v1

http://www.autismconsortium.org/press-releases/press-release-clinical-genetic-testing-in-asds.html

Amazing what you find when you google yourself....

Metroland Special Section - Mind Body Spirit

To Sleep or Not to Sleep . . .
Is the question really that difficult? For some of us, yes

By Amy Halloran
...

“Chronic sleep loss does impair moral reasoning,” says Dr. Joshua Rotenberg, medical director for AcademyDiagnostics LLC Sleep Center, and fellow for the American Academy of Sleep Medicine, by phone from SanAntonio, where he is a neurologist and sleep-disorder specialist.“I take care of a lot of kids with autism, and their parents are chronically sleep-deprived, because kids with autism have insomnia; its just hardwired. It’s really amazing to see the difference in the whole family when the kids are sleeping better.”...

http://amyhalloran.net/pdfs/Amy_Halloran_To_Sleep.pdf

Brain 'wash out' may help premature babies

A technique that "washes out" the brains of severely ill premature babies may aid survival, a study suggests.

Bleeding in the brain is one of the most feared complications for the most premature babies as it can lead to brain damage or death.

The Bristol University study of 77 babies found the technique - involving draining the brain while introducing new fluid - could reduce the risk.

It is thought the technique could benefit about 100 babies a year.

The therapy, pioneered at Bristol's Southmead Hospital, is carried out over a couple of days and requires close monitoring to ensure the pressure in the baby's brain does not rise too high, researchers say....

For more information....

http://news.bbc.co.uk/2/hi/health/8552575.stm

FOR KIDS: Making light of sleep
Teens are prone to sleep problems, but a little sunshine could help
By Susan Gaidos Web edition : 1:10 pm

Maybe this has happened to you: In the middle of class, while you pretended to be paying attention to the teacher’s lecture, your eyelids started to droop. You began having second thoughts about staying up late on Facebook the night before.

Don’t be too hard on yourself. Your computer screen may be to blame. And your clock may be too. Not the clock on your nightstand, but the one in your head. All mammals have a clock located inside their brains. Similar to your bedside alarm clock, your internal clock runs on a 24-hour cycle. This cycle, called a circadian rhythm, helps regulate when you wake, when you eat and when you sleep.

Somewhere around puberty, something happens in the timing of the biological clock. The clock pushes forward, so adolescents and teens are unable to fall asleep as early as they used to. When your mother tells you it’s time for bed, your body may be pushing you to stay up for several hours more. And the light coming from your computer screen or TV could be pushing you to stay up even later.


http://www.sciencenews.org/view/generic/id/56802/title/FOR_KIDS_Making_light_of_sleep