Many parents have very important and difficult to answer questions about their child's neurological disease. Where is a reliable and informative place to obtain these answers?
First, the MOST INFORMED OPINION can only be obtained in person, and NOT over the Internet. If you feel that you neurologist or doctor has not answered all your questions, then try again. Write down your questions and ask your doctor in a follow-up appoinment. Some questions may be unanswerable.
Second, beware of where you are getting information over the Internet. There is a concern that much information provided over the Internet is incorrect, unfounded in fact, or at times untrue . Be sure to use RELIABLE sources, typically from Medical Societies, or from Parent/Patient Organizations. An alphabetical listing of disease-related sites can be found at The Family Village. In general, most of the listed sites have valid information, although it is impossible to account for every Web Page link.
Third, you have access to the medical literature. Although difficult to read, you can browse the medical literature th rough PubMed or GratefulMed. The abstracts (short form) of most articles are available on the Internet, and longer forms of the articles can be ordered.
Unfortunately, there is NOT an answer to every question. Most useful information will be obtained from your doctor, or from other parents who have children with similar concerns.
For useful cllection of websites dealing with children's health, please see our Web Portals page.
Looking for a specific mailing list to meet others with similiar concerns? Try these search engines:
http://www.liszt.com/
http://www.dejanews.com/
http://www.lsoft.com/catalist.html
http://www.reference.com/cgi-bin/pn/go.py