Empatica Epilepsy Watch: Embrace - This watch is coming out summer of 2015 for preorder, and fall 2015 for general release it runs about 200 dollars. It is also useful for autism by letting you know when your child is in a situation that stresses them by monitoring vitals in real time as well as monitoring epileptic activity.
Epilepsy Foundation - A good general site with links to support networks, and general information about epilepsy disorders.
Epilepsy Foundation 40 Seizure Types Explained - A great article listing out 40 common seizure types, symptoms, and charateristics/parts of brain effected.
Epilepsy Foundation Anti-Epileptic Drugs - This is a list of AEDs with their common side effects.
Infantile Spasms Project UCLA - This is a website created by University of California Los Angeles. It is my favorite website for covering nearly all the aspects of IS in a succinct and straight forward manner.
Intractable Childhood Epilepsy Alliance - This website is for difficult to control childhood epilepsy.
Medicaid Waiver Program info by state - This site gives information on the Medicaid Waiver Programs, which allow people who earn too much money to qualify their dependent for Medicaid if they are deemed to have significant medical issues. It can take a while to get this I.e. 6 months + it depends on the state. Yet, it can make medicaid a 2nd and save a lot of medical bills.
My Epilepsy Diary Website and App - This website and app help you monitor seizure activity, and will even help you produce charts and reports to share with your doctor. Super handy.
My Med Schedule - This website helps you organize medications and delivery times. It lets you print checklists, and without it Gloria's complex medication schedule would be a challenge to keep straight.
National Organization of Rare Diseases (NORD) - This organization does tons of good. They are the go to if you have any trouble getting or maintaining your ACTH supply. Make sure you contact them with at least a half week before your supply runs out.
Pediacast on Infantile Spasms from Nationwide Childrens Hospital - This is a great podcast discussing Infantile Spasms. The segment starts at 7 minutes into the podcast and you can fast forward by just clicking ahead on the podcast play segment to minute 7.
Peer View Press- Infantile Spasms: Current State of Identification, Diagnosis and Management - This is a webinar style presentation covering all the basics that someone would want to know about IS. It was put together by Dr. Morita at Cincinnati Childrens Hospital.
The Story of Questcor and Why ACTH is so Expensive - I feel torn sharing this, because I don't think parents need one more thing when battling IS. Yet,I also feel a responsibility to share why there is such a fight with insurance companies, and yes they have a program that can provide the drug for free, the reality is the wait to get the drugs can be several days which are critical.
Understanding Infantile Spasms (Child Neurology Foundation) - This website is another pretty good general IS website. It has some stories of different families and vignettes about their diagnosis, treatment, and after effects of IS.