Lisa, my son has had several EEG's in the last few years. Expect some boredom. :) Take a good book, your favorite DVD or something else to keep you engaged. Think of it like an airplane ride. Where are you having it?
Oh honey! I completely understand the frustration! You can be a debbie downer...you deserve it...just don't live there forever. :)
Bug is on both Lamtrogine and Clonazepam as well. The Clonazepam makes him a little clumsy...and my walls show it. :)
I hope that you seize for them so they don't have to wean the meds...that sucks big time. And do NOT every think that your family deserves better or more...you obviously give them all you can and then some. Not every woman would risk what you did to bring your children into this world. That must have been a very stressful and wonderful time, being pregnant.
I do wonder if you have something similar to my Bug. The folate deficiency can take years to show up and it is what you have described. Hmmm...you don't by chance have Rheumatoid Arthritis do you?
Sorry for the delay in response.
All my best. - Annette
Ah ha! Whenever Bug gets injured...he seizes. The folate deficiency makes his central nervous system very sensitive.
I hear you on...was that the meds or...???? Very frustrating. And those myolconics...argh. Bug has had every type of seizure and I can not tell you how many times someone has said: Don't throw that. And I say: That was a seizure, he wasn't throwing it. Then I proceed to describe myoclonic seizures whether they want to know or not. :)
And you are very welcome. I have been in that place were things just feel so isolated and I will never let anyone feel that way...especially because of their epilepsy! It is not who they are, it is merely a condition they have. It jsut happens to suck more than most. :)
Again, I completely understand. I didn't want any help from anyone with Bug. He started seizing right before his third birthday and regressed. During that regression, he had one T/C a month but his behavior was abismal. He liked to play with his feces, he would run from room to room hitting the walls and the run back to the other room, he would empty all the toys out of the toy bin and then, while I was cleaning up, he would drag my jewelry out and dump it on the ground. It was a little routine we had. :) And I could NOT bring myself to ask for help. Mom's would tell me "it gets better" and I would just smile and think: What you don't know...is a lot. :) I learned some smart aleck coping techniques that have served me well and kept me talking about his condition as if I am talking about how he plays soccer (which he doesn't). And no, it's not weird, not when you are getting some of the responses I have seen.
We were old for almost 4 years that he had 'seizure disorder'. I got tired of hearing that...it was very invalidating for us. So I asked them to please say the word Epilepsy when talking about him. So, at the age of 7 the word epilepsy was first written on his chart. The year he turned 8 was a bad year and we almost lost him a few times, during one of those I demanded, instead of asking, a lumbar puncture. They caved, did it and then never called with results. A YEAR later, a year and 2 more hospital visits for Status Epilepticus and one to start the Keto diet they finally remembered to tell us that he has low levels of 5-MTHF in his brain. 5-MTHF is a major neurotransmitter. The final diagnosis was CFD (Cerebral Folate Deficiency) and a few other folate dependent things. :) His treatment is diary free and Leucovorin. He is doing much better although they are still missing some other treatments that the specialists recommend so we have a bit farther to travel to really get him the help he needs. He is 10 now and a very healthy and happy 10 at that.
What meds are you taking now?