This is my family, my wife Linda, our children Mikey and Kinsey, and myself, Rob. Linda has a full time job (and then some) by taking care of the three of us. She gets help from a nurse or a home-aid with taking care of Kinsey. Dee Dee was Kinsey's long time nurse (since early '95 for about 4 years).
Both Mikey and Kinsey are going to school full time. Kinsey gets most of her therapy (OT, PT, speech and vision) at school. Kinsey loves riding the schoolbus, which picks her up at 7 o'clock and gets her back home by 3:30.
I've worked in the computer software industry for years, and I used some of my skills to organize and create these pages.
My first experience with a seizure was when Kinsey, not even four months old yet, had her first seizure. After the initial shock, I tried to learn as much as I could about epilepsy. Although there are many books to read, I have found that contact with other parents who are dealing with similar cases is extremely helpful. And I found a lot of those contacts through the internet. Many different email lists exist, much more than I have the time for to read, but I never found a more permanent source of information related to epilepsy, seizures and their treatments. That's why I started these pages, and I'm always looking for ways to improve them. I decided I wanted to concentrate on seizures and epilepsy in young children, knowing how tough it can be for a parent to deal with a baby who is going through this.
Most of the information you find on these pages is provided by the parents of the children, sometimes by the child themselves (some of the older children). All I did is create a format in which those stories are written, so that they are easier to read. Beside that, I created the different ways that you can find the stories, and I intend to add some more. Right now, you can see all the stories by name, by age, by primary diagnosis and by treatment. Statistical information on the treatments (to help answer questions like "how successful is phenobarb as a treatment for infantile spasms?") is available. I would like to add a way of finding these children by country/state, so that parents can get in touch with other parents who live in the same area.
None of the information provided is "scientifically correct". It has always been my intention to have these pages reflect the parent's point of view. I only started the idea of the statistical information after I had over 150 children. The high number of stories might show some interesting information about effective treatments, but keep in mind that in this type of reporting will never be considered "scientifically correct".
I would definitely encourage parents to be as involved with treatment of their children as they can be. Doctors have many patients, see many patients per day and they have to divide their time between all of these patients. You on the other hand are with your children most of the day, and you know them and their behavior like nobody else does. Your involvement in the treatment can be crucial. I remember one time when Kinsey was doing really poorly, and her neurologist at that time ordered an increase in her Tegretol, based on the lab work that indicated she was still far under the toxic levels. Yet we believed, based on our observations, that Kinsey and Tegretol was not a good mix, and we refused the increase. Once I talked to the neurologist and explained our observations (every time she got her Tegretol, an hour later she was acting like a complete zombie), she agreed and we lowered her Tegretol instead of increasing it. And this was a neurologist whom we were very happy with, we would still be seeing her if she had not moved to California.
I hope these pages will help you to better understand the condition of epilepsy and seizures. I hope the great number of stories will help you to realize that you're not alone. Sharing your stories with other parents might lead to new ideas. Please make sure that you discuss any ideas you get with the proper medical people involved in treating your children. If you don't agree with your doctor, speak up and get involved. Ask for more explanations, ask for a second opinion, but always continue to take care of your child as good as you can.
Some of the stories on these pages include a picture of the child. Sometimes parents have the picture scanned, sometimes I scan it for them. I like to keep those pictures, together they create a nice collection.
If you want to send me a picture, to add to your child's page, please sent it to:
Rob Evers
17 Woodcrest drive
Nashua, NH 03062
USA