Posted by Tess
on September 13, 2000 at 18:30:34:
In Reply to: Re: I need answers my doctor isn't giving them posted by Brenda on September 05, 2000 at 00:35:44:
: : My son was flown out to Salt Lake City UT for an MEG study which is an MRI and EEg mixed together. In their findings they saw abnormal scattered activity in his right temporal lobe with some frequent bursts in his left lobe. He was to undergo several others tests because in the findings it didn't clearly show any signs of eptileptic activity. But as I read and search for answers it seems to me (and you can tell me that I am wrong) that this activity in his brain is classified as an eptileptic disorder? Please help me, he is only 4 years old and I live in Nebraska and don't have a child neurologist within 6 hours of me and I hate the doctor he has. He should have been doing follow ups with him and he never has for over a year now (since we got our findings back from Utah. I need some help I am tired of being alone trying to play doctor. Thakn you for any information you could give me.
: The reason your doctor isn't giving you the information you need is because they usually don't
: know the answers themselves. I've been dealing with them since my son was 10 and he's 30! He has been on every medication and even had surgery in 1992. I wouldn't recommend the surgery to anyone under any situation. You don't operate on the brain and come out the same person! He had a Vegas Nerve stimulator implant 2 years ago and that hasn't controled the seizures either. I wish you the best trying to find a doctor where you live. We live in a very small town but only have to drive 45 minutes to his doctor. She's very nice but they will be the first (or should be) to admit them just don't know what epilepsy is all about. Best wishes. I will pray for you and your child!
: I also have a son with epilepsy. He was diagnosed at age 9 and is now 14. Working with Dr.'s can be frustrating, I guess because they can't give you any clearcut answers. They don't know the cause, don't know which medicines will work, just experiment. You might talk to your County Nursing Service, and see if they have a neurologist from a major city who comes down regularly to your area. That's what we do. We live out in the boondocks too! Hang in there, and don't let them intimidate you. Ask the questions you want answered even if they do look at you like you're an idiot!