Resources and FAQs
Resource Websites
Rainbow Star Books - www.RainbowStarBooks.com/Inspiration - Christopher's story from the perspective of his speech teacher can be found here, along with lots of other great stories and information.
Epilepsy Foundation - www.epilepsyfoundation.org
Citizens United for Research in Epilepsy (CURE) - www.cureepilepsy.org
Lennox Gastaut Syndrome (LGS) Foundation - www.lgsfoundation.org
Charlie Foundation to Help Cure Pediatric Epilepsy - www.charliefoundation.org
NYY Langone Medical Center - www.faces.med.nyu.edu
Make A Wish Foundation - www.wish.org
Americans With Disabilities Act - www.ada.org
Epilepsy Advocate - www.epilepsyadvocate.com
Here are a few of the questions that I often get asked by parents and caregivers of children with epilepsy:
- How can I get in touch with parents/caregivers of children with epilepsy? Thank goodness for the internet! Search engines like Yahoo and Google have online support groups. Just type in groups in the search blank and see what comes up. I initially joined several Yahoo sponsored groups: Epilepsy, Ketogenic Diet, IS and LGS. I gained a tremendous amount of information and insight from other parents who had children with seizure disorders. I often learned more on these sites than I did from the doctors. No one except those who have experienced it can understand what it is like to watch your child suffer. I will tell you that there were some days I had to walk away from the computer because it was too disturbing to look into my child's future through the eyes of parents whose child didn't have positive outcomes with seizure control and development. But then I would regroup and get strong enough to venture back on. The knowledge of what could lay ahead for Christopher gave me the impetus to fight for his life, and the best possible existence he could aspire to.
- Should I vaccinate my child if he doesn't have seizure control? You and your child's neurologist should talk about this. Christopher's neurologist suspended all vaccinations. Obviously, there was professional concern about the effect of vaccines on the brain. After Christopher had seizure control for a year, his neurologist recommended that he get the vaccinations he had missed, and over a period of time, we complied. People often ask me if I think vaccines caused Christopher's seizures. All I know for certain is that Christopher had a typical infancy up until about 8 months old. During that time, he had received twelve vaccines. Immediately following his last vaccine, he ran a high fever and became sick. At the time, thimerosal in vaccines wasn't limited by the FDA. Today, however, there is an increasing awareness of the potential for neurotoxicity of even low levels of mercury. Concerns about the use of thimerosal in vaccines and other products have been raised as a result of the increased number of thimerosal containing vaccines that had been added to the infant immunization schedule. Because of these concerns, the Food and Drug Administration has worked with, and continues to work with, vaccine manufacturers to reduce or eliminate thimerosal from vaccines. Research, research, research before you make any decisions.
This was our first time participating in the "Annual Walk For Epilepsy" that is held in Washington, D.C. every March. Through the kindness of family, friends and even strangers, we raised a few thousand dollars for the Epilepsy Foundation of Long Island. We walked with members of the LGS Foundation, which is a great support network for those with LGS. The walk is a great event and a unique opportunity to meet others who know what it is like to live with epilepsy or care for someone with epilepsy.
