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From: Dar
Date: 11/20/00
Time: 5:40:47 PM
Remote Name: 208.142.254.33
My experience with my son is very similiar to your own. My son has been put through several tests---those to rule out siezures caused by epilepsy etc at Childrens Hospital. Finally, after tests came out normal, he was diagnosed with V-V. His episodes began when he was almost 2. Our problem was that we didn't know it he was getting hurt and then passing out, or passing out, falling and then getting hurt. His episodes began at his daycare facility which made it even harder for us as his parents to trigger what was causing them. One thing they did note was that both times he had the first two, he would be pretty calm, and staring into nowhere---almost as if he were in a state of sleep or something.
The first episode we saw first hand was after he got a simple cut on a tree at a soccer game. As soon as I saw his reaction, pale face, white lips, sweating and nauseasness, I knew exactly what he was experiencing---I went through this exact same thing as a child and still experience it today. I was never diagnosed however---it was always said that I was scared of blood etc.
I explained the episode to our pediatrician who then put all of the pieces together and made the diagnosis. He said that some people never out grow this situation. Like one of the other people I read a letter from, I do okay in some situations---made it through two c-sections with no problem other than lowered blood pressure from the anxiety, but seeing my son's baby tooth come out made me as sick as a dog.
Just in July, I was rushed from work by ambulance to the ER for what they thought was a possible heart attack. By the time I arrived at the hospital, I was fine---they contributed this episode to stress caused by a new position etc. I think it was a simple anxiety attack that triggered the whole thing.
We have dealt with this situation for almost 5 years now with Michael, and continue to constantly worry about him while on field trips etc. In August he was sent by Medivac to Children's because he suffered facial injury while on a field trip with the daycare. He was sent as a precaution because of the possible head injury, but one of the issues at the scene was the fact that he was semi-conscious etc. We have also had episodes happen at his school when he simply scratched his knees on the playground.
The most important thing I can suggest as a mother is to make sure that all caregivers that may help with your son are aware of the signs and how to treat him if and when an episode occurs.
We have tried several times to get a medic-alert bracelet for our son, but none are available for this condition. I just however, was able to order a Ident-A-Child card through his card which will identify his condition on the back.
Hopefully this will help aid him if he is in another such accident. My thoughts and prayers go out to you because I know what you are facing, and how hard it is to go through. Don't give up---just learn all you can and make sure that once your child is old enough to understand that you explain to them what to do when they feel an episode coming on as well. Michael now knows to sit down or lie down as soon as he starts to feel "funny", and to tell the adult in charge what is going on.
It is nice to know someone out there understands this situaion and how it effects children and the parents as well.