New Diagnosis - Where you can go for help

When my 6 year old daughter Elise started having seizures at 7 months old, you can imagine I was scared. At the time, the doctors we had were not that great. Because of insurance plan restraints we were stuck with a system that cared by prevention, but once you actually had a problem, there was not much expertise. They were not even acknowledging she was having seizures. I started searching the Internet for answers, and have found some reliable ways to get help. Providentially our insurance changed the day she had to be hospitalized. We have experienced many times since, that mother's or father's intuition told us something more serious was happening or a different course of action should be taken, despite what the specialists were telling us. It was this intuition that helped us find the treatment for our daughter's seizures was metabolic instead of chemical after trying many drugs with no success. It also led us to search for a Medical Center outside of our state specializing in our children's disease after seeing specialists and bringing our then baby Paris to the finest hospitals our state had to offer. We found these things on the Internet.

1. For reliable information search for the specific disease or condition's foundation website. Foundations are organizations that raise money for research. Their websites list symptoms, often have Newsletters, resources, and parent chats, you may even be able to find a local support group

2. Yahoo Groups has many "Parents of specific disease chat groups", I have found this to be extremely helpful because you are connected to the people of all stages and experiences of the condition. You can find out about doctors from others that see them. you can encourage and mourn with each other. I often inquire if anyone has experienced a new symptom and what seems to work best.

3. Search for specialized Medical Centers - we go the Cleveland Clinic 1-2 times a year where they have specialists in every region of the body that have actually treated our children's specific disease. I found out they are a "hub" for Mitochondrial disease, it has been worth the trip!