For the last several years we have not been able to get complete control over the complex partial seizures that Tripp has. He will turn his head to the left and IF standing will go around in a circle and sometimes he will fall. He is completely fine after them and can go about what he was doing...they do not seem to bother him. He always says "I'm okay" after them. They last only 10 seconds...never more....because IF they do you can bet they will turn into a grandmal seizure. His neuro says she is not worried about these as they do not harm his brain....but I think we should have more control over them. She has seen one of these herself the last time we were there. He sometimes has 5 or 6 a day.....but ALWAYS at least 2 that I see! When he has several then I will give him an Ativan. She does not like him to be on more than two antiseizure meds. He is on Tegretol xr and Depokate.
WHAT is your take on this????
THANKS!!
I am so sorry for all that your going through. I know all to well how it feels, I had complex partial seizures for over 25 years of my life. I would try a med and it would control them for a while (meaning maybe 6months to a year) then bam! they would start up again.
My neurologist said I had refractory temporal lobe epilepsy and no medication would ever completely control my seizures.
I had brain surgery (RTL) in 2002 and have been seizure FREE since. God is good! I prayed for many years that these seizures would stop. Though I would had rather God instantly heal me, then to let me deal with this for 25 plus years, thats not the way it was suppose to be. I now want to be a H.O.P.E. mentor for the epilepsy foundation. I've gone to a few schools and talked to them about what it feels like to grow up with epilepsy.
The kids were great, they asked alot of questions about my brain surgery and how I dealt with having seizures.
Thanks Cindy....Tripp is mentally retarded and I do not know if he could have this surgery. I would love for him to be seizure free! He has been through SO much these last 3 years. In the hospital a number of times for stomach problems. We did find out he has gastric empty problems with his stomach and he is on meds for that.
He is my sweetheart. I pray each day all day long sometimes for God to heal him. I admire your faith....and that is what has gotten me through all this. My church and my family and most of all my GOD!
Bless you!!
Just wondering how Cindy's surgery went, any problems with sight,
hearing etc. since? My doctor is suggesting that I maybe have
surgery done since mine is also refractory and have them 40
years uncontrolled.Mine is also in the temp. lobe.
Betty,I too would be a little concerned about surgery for your son,
since he is also mentally challenged.Best of luck for him.
Thanks Sherri....that is what my neuro says and since they do not bother him she says why put him through that. I would not be able to make him understand anyway.
I did not have any hearing loss, or sight problems. I went through days of testing. mri's eegs, ct scans, pet scans, a wadda test/that is were they put half of your brain to sleep while testing the other side to check which side your memory and speech are on.
I had surgery at UVA in Charlottesville Va. I would do it all over again, to have the peace I have now and to have my Freedom back. it's worth a shot to go through the testing to see if maybe you might be a canaidate for the surgery. the surgery lasted about 6 hours, and it took me a while to get over the migraines. It was worth a few migraines to get past the seizures.
I did alot of praying and thankfully the surgery was a sucess. if you want to talk to me about the surgery just let me know. be happy to help if I can.
