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Biomedical testing resources

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I started a collection of biomedical testing resources.  If a link doesn't work, try removing any blank spaces in the address.  If it still doesn't work, let me know.

Tests available now:

http://www.emedicine.com/PED/topic1780.htm - list of biomedical tests sometimes ordered in connection with an autism evaluation.  Includes lab studies, imaging studies, genetic tests, and other tests. 

http://www.nytimes.com/2007/12/28/health/research/28dna.html ?pagewanted=2&_r=2&ref=health  - New York Times article about DNA microarray analysis, which can test all known chromosomal disorders at once.  The old technology could only test one disorder at a time (for example Fragile X) and had a hard time detecting some deletions and duplications.  The new test is expensive at $3,000, but the article mentions that one major insurer in Utah has agreed to cover it.

http://www.autism-pdd.net/forum/forum_posts.asp?TID=18139&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=neurologist - Official neurologist guidelines for biomedical testing.

http://www.greatplainslaboratory.com/casein.html - Urinary peptide test for detecting problems digesting gluten and casein.  This is still considered experimental, so may not be covered by insurance, but some health care providers do the test (my son had the test at a hospital here in Norway).

http://www.talkaboutcuringautism.org/medical/medicaltesting. htm - "Medical Testing, Common Issues and Treatment Information" from TACA.

http://www.childrenshospital.org/az/Site1509/mainpageS1509P0 .html - qEEG.

http://www.neurodevelopmentcenter.com/index.php?id=39 - qEEG/brain mapping and autism.

http://md.gehealthcare.com/patient/diaguide/spect.html - SPECT brain scan.

http://www.mgh.org/nscience/neurphys.html - What is LTM vEEG?

http://www.nlm.nih.gov/medlineplus/ency/article/003791.htm - general info on MRI, which makes the point that the sensitivity is dependent on whether dyes are used and on the experience of the radiologist.

Promising research

http://www.autism-pdd.net/forum/forum_posts.asp?TID=20021&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=research - a few articles about a technique which holds promise for the future -- using a special 3D camera to uncover unusual facial symmetry and diagnose various genetic disorders, including autism.  The camera is found almost exclusively in hospitals that do maxilofacial surgery.

http://www.autism-pdd.net/forum/forum_posts.asp?TID=19186&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=magnetoencephalography - MEG (magnetoencephalography) is expected to have some clinical applications in a year or two, since this test can already identify 6 very different conditions with 90-100% accuracy within 40-60 seconds.  Research on identifying autism with this method is beginning.

Sample social stories:

http://www.pitt.edu/~nminshew/story_index_return.html - 5 sample stories with pictures, made for older kids participating in research studies.  Includes one about a functional MRI.

http://www.autismcommunityconnection.com/files/EEG_Test_pdf. pdf - EEG, with photos.

http://www.autismcommunityconnection.com/files/Blood_Test_pd f.pdf - blood test, with photos.

http://www.helpautismnow.com/?page_id=12 - two illustrated social stories with text and audio!  "Going to get blood drawn", "Going to the doctor"

http://www.hiyah.net/online_going.htm - slide show with kid-friendly pictures of going to the doctor.  If you click on the tab "download", you go to another area of the website where they have two slide shows, one on going to the doctor for an illness, and the other on going to the doctor for a check-up.  The website is kind of slow and seems to use a lot of memory, but I like their slide shows (have used the dentist one many times).

http://www.childrenshospital.org/arthur/index_en.html - a children's guide to the hospital, featuring the PBS character of Arthur.  The guide is to Children's Hospital, Boston, but I'm sure it's useful for hospital stays in general.

 http://leechbabe.files.wordpress.com/2008/12/social-story-al lergy-tests1.pdf- allergy testing (with pictures)

Tips for health care professionals:

http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=306&a=85 21 - This information sheet is aimed at all health professionals who may come into contact with an adult or child with autism for reasons other than their autism. Doctors, nurses, paramedics, dentists and opticians may find this useful. Much of the advice in this information sheet will also be of use to hospital staff who are caring for an in-patient with an autistic spectrum disorder.

www.northshorelij.com/workfiles/autism/YourNextPatient.pdf - brochure "Your Next Patient Has Autism"

http://www.nslij.com/body.cfm?id=2849&oTopID=0 - Autism Toolkit for Health Care Professionals (see table of contents on the left side of the screen)

http://chat1autism.wetpaint.com/page/Doctors,+Dentists,+EMT, +hospitals,+Firefighters+and+autism...?t=anon  - tips for doctors, EMT, hospitals and more.

http://www2.nursingspectrum.com/articles/article.cfm?aid=135 8 - "Asperger Syndrome Presents Special Challenges for Nurses"

http://amanda.autistics.org/medletter.html - sample medical letter written by our member gtto, who has autism.

http://scautism.org/doctor.html - "Strategies for going to the doctor"

http://www.papremisealert.com/id71.html - "Autism 101" for EMS personnel

http://www.helpautismnow.com/p/physhandbook.pdf - "Autism Physician Handbook" which gives good tips for optimizing office visits (p. 29-33), info on GI problems, and an illustrated and comprehensive list of behavioral symptoms.

http://www.autismwebsite.com/ari/info/kirz.htm - Letter to anesthesiologists, written by an anesthesiologist who herself has 2 children with autism.

http://www.helpautismnow.com/?page_id=9 - ALARM:  Autism is prevalent, listen to parents, act early, refer, monitor.

http://www.cdc.gov/ncbddd/autism/actearly/downloads_hcp.html - materials for health personnel, from CDC's "Learn the Signs, Act Early" campaign.

http://www.acpinternist.org/archives/2008/11/autism.htm - Caring for adults with autism.

Practical tips:

http://www.autism-pdd.net/forum/forum_posts.asp?TID=13906&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;PN=1&TPN=1 - tips on giving medicine

http://www.autism-pdd.net/forum/forum_posts.asp?TID=27733&am p;am p;am p;KW=cough - tips on teaching to cover their cough

Any resources to add?

 

NorwayMom40033.0431712963Well that stinks it's only in utah!Does insurance pay for the testing?

My eldest son's MRI came back as "normal" but I was never really understood  what they could have found.  I finally found an answer today:

Abnormal results may be due to:

Source:  http://www.nlm.nih.gov/medlineplus/ency/article/003791.htm

PeriVentricular Leukomalacia is another possibility, sometimes seen in those who were born premature.
 
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