Our seizure journey

Thank you for your reply. Yes I have been diligent about checking his temp often and so far he is not running a fever. I understand that it takes time to get the med to start working in his system but I think like you said I want it to work now. Yes I am working with a children’s neurologist and doing what is asked for my sons treatment. I am hoping that his next MRI and eeg come back normal. Have you had any experience with low blood sugar causing these seizures? I know as an adult I get shaky when my blood level is low because I haven’t had anything to eat. Sorry I think I’m just thinking out loud. Again thank you for your reply. 

Thank you Amy Jo, it is sad I know I’m in denial but I’m trying to keep a postive attitude about all of this to get us through it. My son is seeing a neurologist who on his online profile says he specializes in to name a few things seizure disorders. We have a eeg coming up so we will wait for those results. Should I ask the Dr. for any special test that maybe they overlooked and being mommy’s we know they should have ordered them? I wish you luck with you and your little one luck and sending postive energy your way. 

Any big health diagnosis is a shock, it's going to take you a while to process. You have a big job taking care of your young guy, remember to take good care of yourself along the way. My 'little one', my youngest, is a few years away from being taller than me. Soon I'll only be taller than the cats although they have a propensity for staring at people from high perches.An epileptologist just treats seizure patients, so they don't tend to treat patients in other areas of neurology. Our epiletologist also has a PhD, something to do with EEGs. Ask if he is an epileptologist, then keep that in mind if you need to switch. They probably drew blood to test the low blood sugar and other easy things to catch in blood, the initial easy tests are what everyone does because they are easy, epilepsy is not so easy to pin down. My child had a number of tests before diagnosis just due to coincidence, so she even had recent lab results of a csf sample on file. One does the less common tests only when there's a reason. We are not at the point where all patients get genetic testing but for those it is reasonable for, they might do additional testing years later as new tests become available. There is no perfect test for epilepsy. That makes it harder to deal with it. There is no perfect piece of info that will get your brain around it, it will just take time.