So, this is more of a ventind post! The children's hospital (which I will not name-but easy to figure out) is not being so helpful. Cole has been getting up in the middle of the for 6 months...having cluster seizures, shaky, eye's glossed over. I asked the dr if we could do an over night EEG...because I couldn't do it anymore. Having to get up in the middle of the night for practially 2 years stright is not what I had in mind.
You would NOT believe it...but she told me they didn't want to do one. I've heard other mom's say they had to fight to get an overnight EEG or 3/day. And when they meant fight...I didn't know they meant F-I-G-H-T!
She asked me why I wanted it...and I told her as I was bawling...that in the 1 1/2 years that Cole has had seizures, he's only had an MRI & two 20 min EEG (the resent one he wasn't even a sleep). She told me no again, and I told her I have to fight for my son and I wasn't going to sit back anymore and not doing anything. She kept saying "but we have a plan with the medication"...and I was like "what does the medication have anything to do with an EEG". She kept resisting and I asked her if there was a reason she didn't want to do it...she said she could do it...but didnt want to and wouldn't give me a reason. I told her that "I have good insurance and if the insurance covers it why we couldn't do it!?", and her answer was "because it may not show anything". I told her I was aware of that...but logically, if my insurance will pay for it and he's only had 20 mins EEG's then it would be logical to one. And I know it may not show anything (probably because they don't even know how to read an EEG- TRUE!)...but if it did, then would would go from there!
I couldn't believe that I had to have this conversation with a dr while my child has had seizures for 1 1/2 years and few tests!
But don't worry...we are trying to get into the Cleveland Clinic in Ohio soon!!! with the best drs (THAT ACTUALLY WANT TO HELP!) and as "C" called it...the "Disneyland" of hospitals w/ Day Spas & fine dinning etc!
oh, and the nerve of the dr to ask me if I could even get off of work for 3 days for it!!! WHAT KIND OF MOTHER DOES SHE THINK I AM??? DOES SHE NOT GET THAT I PUT MY CHILD FIRST???