Report on Seizures Survey: Supplement Schafer Autism Report

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Subject: Update on Seizures Survey: Supplement Schafer Autism Report

Supplement

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UPDATE ON SEIZURES SURVEY

Elias Tembenis, who was recovering from autism, passed

away while having a seizure.

In May, the second annual Elias Tembenis Seizures Think

Tank was held at the Autism One/Generation Rescue Conference. This

event was part of a continuing dialog between conferences including

Defeat Autism Now!

Prof. , Science Coordinator, Autism Research Institute/Defeat

Autism Now!, and Dr. Frye, Assistant Professor of Pediatrics

and Neurology, University of Texas-Houston, kindly served as

co-moderators of this May's special session, which brought together

over two dozen researchers and clinicians.

Dr. Frye had previously designed a seizures survey that asked

parents of children with autism and seizures to rate the effectiveness

of several traditional and non-traditional treatments and the effect of

these treatments on behavior. The survey used a statistical technique

called cluster analysis to automatically divide up the treatments by

their characteristics. The analysis

automatically

separated the anti-epileptic drugs from non anti-epileptic drugs. This

was due to the fact that anti-epileptic drugs were effective in treating

seizures but had a mild negative side effect on cognition, language and

behavior, while many of the non anti-epileptic drugs had no negative side

effects or a positive effect on cognition, language and behavior, but

were not as effective in controlling seizures. The survey then used the

cluster analysis to examine whether there were subsets of anti-epileptic

drug or non anti-epileptic drug treatments that were more effective than

the rest. For the anti-epileptic drugs, the survey found that valproic

acid, Levetiracetam, Lamotrigine and Ethosuximide were the most effective

at treating seizures and the least detrimental on cognition, language and

behavior. For the non anti-epileptic drug treatments, the survey found

that the ketogenic, Atkins and gluten-free/casein-free diet were the most

helpful in controlling seizures while also having some beneficial effect

on cognition, language and/or behavior.

If you would like to participate in this survey, please refer to the

following:

For individuals with seizures, subclinical epileptiform discharges or

seizure-like activity, please use the following link.

For individuals without seizures, subclinical epileptiform discharges or

seizure-like activity, please use the following link.

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SUMMARY OF BIOMEDICAL TREATMENTS FOR AUTISM

, PhD, also

has a helpful 28-page paper, " Summary of Biomedical Treatments for

Autism, " that can be found on the ARI website here.

This paper gives an overview and then specifics for major biomedical

interventions, including rationale, research, and safety considerations

for each treatment. This paper is reader-friendly and a good starting

point for those families beginning the biomed journey as well as seasoned

parents wanting to do some fine-tuning. Some of the modalities discussed

are improving diet; essential fatty acids; vitamin/mineral

supplementation; and anti-fungals. This document is a resource that can

be referred to again and again.

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DR. STEPHEN EDELSON RECEIVES AUTISM TRUST AWARD

The Barber Autism Trust Award, named in honor of the father of

Autism Trust founder Polly Tommey, honors individuals who go out of their

way to support our children and families. The third award was selected by

Autism One and given to ARI Director Dr. Edelson on Friday, May

28. Polly Tommey's father recently passed, but he knew who was to receive

this award and was delighted. Congratulations, Steve!

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SAVE THE DATE! NEXT DEFEAT AUTISM NOW! CONFERENCE

The next Defeat Autism Now! Conference will be held October 7-10, 2010 in

beautiful Long Beach, California. Details will be posted in July here.

______________________________________________________

SPOTLIGHT ON STAFF

We will be highlighting the staff members who bring the wonderful

information from the Autism Research Institute (ARI) and the Defeat

Autism Now! Conferences to you. This week, we would like to introduce you

to Fulton.

Fulton and her

husband are the parents of two boys, 2-month-old and 7-year-old

Grant (who is on the autism spectrum and who has undergone extensive

biomedical and behavioral intervention). They live in Olympia,

Washington. initially began working for ARI as a volunteer in 2006

after meeting Drs. Bernie Rimland and Steve Edelson at a conference.

Before too long, she came on staff to do a variety of tasks, including

working on the ARI webpage and monthly e-newsletter, creating the Hands

on Demonstration booth at ARI/DAN! Conferences, and coordinating research

studies. Starting this fall, will be managing the ARI conferences.

has an M.S. HCDE from the University of Washington in Seattle and

is also chapter coordinator for the Washington chapter of the parent

group Talk About Curing Autism.

Lenny Schafer editor@...

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