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The
Infantile
Spasms
Resource |
|
Epilepsy resources |
The internet has a large amount of information about epilepsy - which means
that it can be difficult to find what you need. This page provides a route into
Aladdin's cave. It provides links to the different sorts of information
available through the internet and, in the case of the world wide web, to the
best directories of links on epilepsy.
The information on this page relates to epilepsy in general; links to
specific topics can be found in the relevant pages of the Ketogenic Resource.
Maintaining a link resource of this type is difficult because of the rate at
which the amount of information is increasing and the links themselves are
altered. Please help us to keep this resource up to date by advising us by e-mail
of any links that have changed, or of good information that you think should be
featured.
Usenet newsgroups
There are over 28,000 different Usenet newsgroups; just two of them are
related to epilepsy. Both are very much support oriented. Newsgroups are public
and can be accessed by anyone. Subscribers to a topic receive all the e-mails
sent to the newsgroup, and can contribute their own e-mails.
Mailing lists
Mailing lists are a private version of newsgroups. A mailing list can be set
up by anyone with continuous on-line access (and the appropriate software), and
the motivation to run a list on a particular topic. There is no public catalogue
of mailing lists, so it is more difficult to find relevant lists. Individual
lists are operated on different bases; some are selective about who can
subscribe, some operate acceptable standards, and some are moderated (ie all
messages must be approved by the list owner). All the mailing lists are very
much support oriented.
Bulletin boards
Bulletin boards are an older form of mailing list, now usually accessed
through the web. Messages are sent to the bulletin board via e-mail, but are
displayed on a web page. Personally, we find them inconvenient to use, and they
clutter up the search engines, making it more difficult to use the web. The most
relevant is the webForum group.
Chat rooms
Chat rooms are on-line interactive e-mail sessions. When you participate in a
chat room all your e-mails are sent to all the other current participants in the
chat room. It is a rather laborious way of communicating, and is best for
trivia. Different chat rooms work in different ways and most require special
software; the best seems to be mIRC .
For a novice's guide see Directions to the PWE Chat
room (link not working).
Contact databases
These are lists of families or people with epilepsy.
World wide web
There are many excellent sites about epilepsy. Rather than listing these
exhaustively, we have provided links to three sites which maintain the best
indexes of links about epilepsy. Apart from the quality of their links, the
three sites also provide a lot of other good information about epilepsy.
Epilepsy
Ontario
Epilepsy Ontario's mission is to improve the quality of life for all people
in Ontario affected by epilepsy. While doing this, it maintains an excellent
site with lots of good information about epilepsy, including an excellent
selection of links:
Epilepsy resources
This excellent site is maintained by Sarah Blake. The Epilepsy Resources is
one of the most comprehensive sources of links and was the most helpful source
to us when we found out that Marchant had infantile spasms, and we needed
information about epilepsy fast. The links are arranged under the following
topic headings:
- General information
links This page contains some
brief descriptions of seizure types, information about things which provoke
seizures and things which can cause a person to have epilepsy, and
information about how epilepsy is diagnosed.
- Personal
experiences This page contains a
catalogue of links to personal accounts of people's experiences of coping
with their own or a family member or friend's epilepsy.
- Medications
Here you can look up information about various medications used to
treat epilepsy.
- Surgery
This page has links to pages with information about surgical treatment
of epilepsy.
- Ketogenic diet
Here are some pages with information about dietary treatment of
epilepsy in children
- Other treatment
options (link not
working) Here are a few links about alternative
treatments.
- Lifestyle Issues
This page examines how epilepsy affects a person's lifestyle and how
lifestyle affects epilepsy.
- Support groups (link not
working) Here is information about various support
groups on line.
- Pseudoseizures
This is a paper about seizures which are caused by psychological
factors rather than epilepsy.
Washington
University Pediatric Epilepsy Centre
Washington University at St Louis has a comprehensive web site, with links on
a range of epilepsy topics:
International organisations
International Bureau for
Epilepsy
The aim of the Bureau is to improve the quality of life of all persons with
epilepsy and its objectives are:
- To provide a broader understanding of the nature of epilepsy and the needs
of persons with epilepsy
- To promote the exchange of information among organizations concerned with
epilepsy
- To bring together, from all sources and countries, information about
social and medical care for people with epilepsy and to disseminate such
information throughout the world
- To represent epilepsy in relation to national and international
organizations concerned with human welfare
- To encourage education and training with respect to all aspects of
epilepsy; and to stimulate research into the social aspects of epilepsy
International League against
Epilepsy
The International League against Epilepsy's objective is to advance and
disseminate knowledge concerning epilepsy. Membership consists of national
professional organizations and individuals involved in research and interested
in exchange of scientific information concerning epilepsy
National associations for epilepsy
Most countries have one or more national associations providing support for
epilepsy. Most of these associations are conservative in their approach to
epilepsy, and are usually more oriented towards the issues of epilepsy in older
people rather than in children.
UK related resources
This is a list of all the UK internet resources for epilepsy of which we are
aware.
Support groups
Medical centres
(prototype) Journals
-
Epilepsia (The journal of the
International League Against Epilepsy)
- Epilepsy
Research
- Journal
of Epilepsy (link not
working)
- Neuropharmacology
publishes full papers, rapid communications and reviews concerned with the
actions of biologically active substances on the central and peripheral
nervous systems
- Seizure
(the journal of Epilepsy Action)
Books
Books for parents
- Epilepsy in the
Classroom
- Jeannie Frank Cecily Lynn Betz, 1993
-
- Seizures and Epilepsy in
Childhood : A Guide for Parents
- John M Freeman et al, 1997
-
- The Epilepsy Diet Treatment :
An Introduction to the Ketogenic Diet
- John M Freeman et al, 1996
-
- Taking Seizure Disorders to
School : A Story About Epilepsy
- Kim Gosselin, 1998
-
- Your Child and Epilepsy : A
Guide to Living Well
- Robert J Grumnit, 1995
-
- Children With Epilepsy : A
Parents Guide
- Helen Reisner (ed), 1988
-
- The Brainstorms Family :
Epilepsy on Our Terms
- Steven C Schachter et al, 1996
-
- This book presents the firsthand personal accounts of children with
epilepsy and their parents. In their own words, these children and parents
vividly describe their experiences. These accounts provide realistic
insights into the myriad issues encountered in living with childhood
epilepsy.
General interest books
- A Guide to Understanding and
Living With Epilepsy
- Orrin Devinsky, 1994
- This easy-to-read guide for lay persons offers an overview of the medical
and social topics relevant to epilepsy, including diagnosis and treatment,
epilepsy in children and adults, legal and financial issues, and available
resources. Includes a complete glossary of terms and anti epileptic drugs,
plus tables and illustrations.
-
- Epilepsy, Pregnancy, and the
Child
- Janz Dieter (ed), 1982
-
- Challenge of
Epilepsy
- Sally Fletcher / Paperback / Published 1986
-
- Epilepsy A to Z : A Glossary
of Epilepsy Terminology
- Peter W Kaplan, Peter A Kaplan 1995
- Provides health care personnel with brief descriptions of conditions,
medications, and anatomical functions related to epilepsy, at a level
between a dictionary definition and a textbook discussion
- Epilepsy and the
Family
- Richard Lechtenberg, 1984
-
- Seized : My Life With
Epilepsy
- Teresa McLean, 1996
-
- The Falling Sickness : A
History of Epilepsy from the Greeks to the Beginnings of Modern
Neurology
- Owsei Temkin, 1994
Medical reference books
- Epilepsy in
Children
- Jean Aicardi, 1994
- Coverage is in four parts--on general ideas about epilepsy; the major
types of epileptic fits and syndromes; epileptic manifestations in relation
to age, cause, duration, and precipitation of fits; and diagnosis,
prognosis, and treatment
-
- Epilepsies of
Childhood
- Niall V O'Donohoe, 1993
-
- Surgical Treatment of the
Epilepsies
- Jerome Engel (ed), 1993
- The leading authorities from all of the world's major epilepsy surgery
centres present the first and only published consensus statements on all
crucial and controversial aspects of epilepsy surgery --from identification
of candidates for surgery, to non-invasive and invasive preoperative
evaluation, choice of surgical procedure and techniques, and postoperative
psychosocial rehabilitation.
-
- Antiepileptic Drug
Development
- Jacqueline A French (ed) et al, 1997
- Key issues addressed include new drug discovery, current trial
methodology, innovative trial designs, ant epileptic drug evaluation
procedures and criteria, and global drug development. The book also includes
an update on newly released drugs in the United States
-
- Antiepileptic
Drugs
- Rene H Levy et al, 1995
- A revised and updated comprehensive text-reference that presents the
latest advances in the chemotherapy of the epilepsies. The format allows
immediate access to detailed information on any epileptic drug. Separate
chapters detail the basic mechanisms, disposition, interactions, clinical
use, and toxicity of the older as well as the newer drugs
-
- Comprehensive Management of
Epilepsy in Infancy, Childhood and Adolescence
- Samuel Livingston, 1972
- Standard reference by the man who kept the ketogenic diet alive for many
years
-
- Diagnosis and Management of
Neonatal Seizures
- Eli Mizrahi, Peter Kellaway, 1997
- This book looks at the scope of the clinical problem of neonatal fits,
including prevalence and incidence, describes the mechanisms of initiation
and propagation of epileptic fits in the immature brain, analyses
ontogenetic factors that may differentiate fits in preterm, full-term, and
older infants, and defines the various types of fits in a clinically
relevant manner.
-
- Handbook of Pediatric
Epilepsy (link not
working)
- Jerome V Murphy, Fereydoun Dehkharghani (eds), 1992
-
- The Comprehensive Evaluation
and Treatment of Epilepsy
- Steven C Schachter, Donald L Schomer (eds), Published 1997
-
- Status Epilepticus : Its
Clinical Features and Treatment in Children and Adults
- Simon Shorvon, 1994
- This book is both a reference work and a practical guide, useful for a
wide range of clinicians, neurologists, psychiatrists, paediatricians, other
specialists and generalists, and all those dealing with emergency and
intensive care medicine.
-
- An Atlas of
Epilepsy
- DF Smith (ed), et al, 1997
- First full colour brain atlas ever published on epilepsy. Contains some
200 illustrations of EEGs, CT and MRI scans, and histology slides
-
- Women and Epilepsy
- MR Trimble (ed), 1991
-
- Antiepileptic drug therapy in
pediatrics
return to Infantile
spasms and other epilepsies
(checked: 23 November 2002)
(update 3.4: 22 January 2003)
(issue 3: 20 February 2000)