I am NOT happy with Michael’s neurology practice! As soon as the new Health Insurance plans and rates come out, we are switching away from Kaiser! We got approval for his EEG last Wednesday so we took him down to his Neurologist’s office to have the probes put on. Because it is a 48-hr EEG, they just send you home. They said we could take the probes off on Friday when it had been 48 hrs. and then just bring the machine back to them on Monday. But let me back up…They gave us a broken machine. You are supposed to be able to just hit a button when he has a seizure so that way, they know that what they are seeing on the EEG correlates with what we are seeing in person. Well this little “button” was broken so we just had to write down the time they occurred. My problem with that is (other than the obvious fact that an EEG costs $150/hr so we deserve a working machine) how do we know that the time on the machine is the exact time as our clocks at home? A few seconds can make a difference when you are looking at tests like these! What if our clocks were off by a minute? They might miss the episode that we wrote down! Worst of all, when we took the probes off Michael’s head, which we did as gently as possible, there were welts and broken skin all over his head. I don’t know if it was an allergic reaction to the glue but in one spot it left a blister so I also wonder if they could have been burning his skin or something? The entire time he had the probes on, he seemed a little uncomfortable – just not himself. After seeing what these probes did him, it is obvious that he was in pain the whole time. Mike and I just about cried when we realized this. Can you imagine your child in pain and they want nothing more than to tell you but they can’t??? It’s absolutely heartbreaking.
After we took the probes off, we gave him a nice, long bath and then I held him for about 2 hours. He just slept quietly and peacefully on me – something he hadn’t done since the EEG started. It was like he was saying “thank you for taking those darn things off!!”
I’ve included a picture of what the EEG did to his head as well as a picture of me holding him after his bath.
I will return the EEG machine to his Neurologist’s office today and they will be getting an earful from me. I will update everyone once we get the results. Thanks for checking in!
Michael Warechowski IV 
Tears of anger are just streaming down my face! When do you two and your beautiful son get a break. I will be thinking of you when you take the machine back (wish I could be a fly on the wall). Love to you all!
Poor baby……………sending prayers…………;-)
Makes me so sad the suffering he has bin true. No child deserves this… praying for you beautiful boy.
Unbelievable. Very upsetting… Praying for peaceful days ahead.
My heart absolutely breaks for you!! It just makes me cry reading your posts!! I wish so bad there was a cure!!! Praying & begging The Lord to help you!!
I was wondering if you have seen the young girl Eliza’s who is turning 5 story on fb. She also has a rare neuro disease that is fatal & no cure but her family is raising money to help try to save her with a trial
Study that dr’s feel is the answer to reversing the disease completely!! Is there anyway Michael could be part of this trial? They are raising 2 million $ for it to help other children as well!! I know you would do anything!!! Praying you find answers!!!!