When surfing the web for medical information
# Website information is geared toward the average person with the disorder
# most websites are for adults reading about conditions that affect adults.
# When reading about a child, please look for informational or supportive sites that are about kids or have a section about kids.
# some sites have very scary information about the worst way a disorder can show up. You way wish to hold yourself back from looking too deeply into a condition that your family member may not even have!
# Some websites are made to look like good places for information when they are really trying to sell you something. Double and triple check before buying something (especially something that seems too good to be true) just because someone at a website recommends it
www.familyvillage.wisc.edu
**this is the best starting place for almost any disorder that may lead to a disability. The site is made to provide the broad array of information needed to find services, products, social connections, camps, and much more for persons with disabilities. In the library you can find many many disorders with links to the offical or some of the best websites both to give information or support for that particular disorder - every disorder from Angleman's to Zellweger's is in this library.
www.ninds.nih.gov/disorders/disorder_index.htm
**Another excellent library of disorders with easy to find names that are linked with professionally reviewed information. Part of the excellent site for NINDS (National Institute of Neurologic Disorders and Stroke)
http://www.ninds.nih.gov/disorders/disorder_index.htm
This part of the NINDS (National Institute of Neurologic Disorders and Stroke) has links to many many websites. All sites here are recommended by professionals.
Developement
www.helpmegrowoc.org - this organization is sponsored by CHOC and UCI to help families in Orange County get the services and evaluations needed for children 0-6 years of age. They are working towards children with development difficulties having early detection and intervention. They are also an excellent place for recommendations.
Autism - ADD - ADHD - School Issues
http://www.autism-society.org
the Autism Society of Amergica is a very good place to start when looking for information and support
http://www.ninds.nih.gov/disorders/autism/autism.htm
information sheet on Autism by the National Institute of Neurologic Disorders and Stroke
www.chadd.org national organization of Children and Adults with ADD and ADHD - wonderful resource with lots of links, education, support, conferences
http://www.nimh.nih.gov/index.shtml - National Institude of Mental Health - with information on a broad array of mental conditions this site is the offical site for the NIMH - it is monitored by professionals.
Epilepsy and Seizure related links
Local Epilepsy Advocacy and Support Groups:
www.epilepsyalliance.org serving Orange County, California's persons with epilepsy
Epilepsy Alliance of Orange County
www.theepilepsycenter.org serving Riverside and The Inland Empire's persons with epilepsy
The Epilepsy Center – Riverside County
www.epilepsy-socalif.org Serving LA County's persons with epilepsy
Epilepsy Foundation of Greater Los Angeles County
www.epilepsyfoundation.org - site for the National EFA - Advocacy and Support
Epilepsy Foundation of America
Epilepsy Informational Sites
www.epilepsyfoundation.org/local/norcal/parents-resource-guide.cfm
Parent Resource Guide for Seizure disorders and Epilepsy
Epilepsy Foundation of Northern California has a wonderful tool that is free and downloadable in PDF format. This guide is great for parents and professionals. This guide teaches about epilepsy and seizures, appropriate first aide for seizures, services that are available to families with an epileptic, how to get services, a seizure description tool, forms to use when going to the doctor or writing down medication effects. I can not recommend this too highly. I also suggest that this be brought to the school or work - if not the whole file than at least the seizure description tool which is done with pictures and with words that are available in English, Spanish, and Vietnamese.
www.epilepsy.com
A very complete website that is monitored by internationally respected epileptologists. This site is so full of information, including videos and podcasts, that you could spend days here. Careful as the majority of the information is about adults. If you or the person in your life with epilepsy is an infant, child, teen or is elderly, then it is best to look for the part of the site that is specifically about that age group.
www.akfus.org
This organization was set up to give information about epilepsy and to bring awareness about epilepsy to the public. The Anita Kaufman Foundation is run by the ever energitic and very generous Debbie Jones, the best friend of the now pasted Anita Kaufman. My hats off to Debbie and I salute Anita for their efforts to erase the stigma that is associated with epilepsy and seizures. If you check out this web site you will find an array of information and products that are given away
Research into Epilepsy and other epilepsy sites
www.epgp.org
The Epilepsy Phenome Genome Project (EPGP) Why do my children have epilepsy? Why don’t seizure medications work for some people? Why do my sibling and I both have epilepsy?
www.purpleday.org
For the promotion of an international day of epilepsy awareness
www.seizuretracker.com
free written or online tool to keep track of seizures - great to organize thoughts for the doctor and to track the changes in seizure frequency and other side effects with changes in life and/or medications.
www.seizuresupport.com
Site by a parent of a child with epilepsy, this parent designed and sells a Safety Place Mat that has allowed children with a number of problems, including the tendency to suddenly fall and hit head on table, to sit at the table without fear of injury and without spills going all over the kitchen.
www.epilepsyclassroom.com
Class room resources for Parents and Teachers through Epilepsy Foundation
www.vnstherapy.com
this is the site designed by the Cyberonics outlining there product: the Vagal Nerve Stimulator. I always recommend that anyone looking to education themselves on a product look at both an independent site that is reviewed and updated by professionals in their field and the site that is built to promote the product.
Specific Neurologic disease or syndrome links
http://www.wemove.org/
excellent website - made for easy use with lots of good information on children and adult movement disorders. There is a Kids Move portion of the site.
http://www.pediatricstrokenetwork.com/
Pediatric Stroke Network
www.rarediseases.org
National Organization for Rare Disorders
www.umdf.org
United Mitochrondrial Disease Foundation
www.tsalliance.org
The Tuberous Sclerosis Alliance
www.ucp-oc.org/UCP
United Cerebral Palsy of Orange County
www.signaturegenomics.com
Industry site that outlines testing for specific genetic disorders.
http://www.familyconnect.org/parentsite.asp
Great resources for the visually impaired and their families
Medical Identification Links
www.laurenshope.com
A Medical ID bracelet that combines safety with style
www.medicalert.org/amb
standard in the industry
www.medicharms.com
medical alert ID that is child friendly or as watch or as shoe tag for people who would rather not wear the ID.
Downloadable PDFs
Treatment of Migraine Headaches in Children and Adolescents
http://www.aan.com/professionals/practice/pdfs/Headache_Peds_Patients.pdf
Epilepsy and Seizure Disorders: A Resource Guide for Parents
http://www.epilepsynorcal.org/docs/Parent_Guide.pdf
-this is a free downloadable 38 page PDF that has some excellent pages to use to log results of med changes, to bring with you to your doctor's appts, describe seizures, make action plan for the school.