As soon as we got home from the EEG I got on the phone to our neurologist. I was so mad that we have been getting the run around. I also knew that the results of his EEG was NOT normal. They had a student in the room doing the computer portion of the testing and as a “Dr. Mom,” we can read those little suckers like a book.
As we were leaving I stopped the real tech and asked her if he was having seizures during the test. I also prefaced it with “ I know that you aren’t allowed and it isn’t a diagnosis but...” she answered, that it was not the worst she has seen. That he was having a lot of brain irritation and activity and that it was constant.
My heart was broken.
I knew that there were things going on in my sweet boys brain. I HATE that he is stuck in a place where it is always irritated. Where it doesn’t shut off. I feel sad. I feel guilty and then I am MAD!!!
So on the phone I go. The neurologist lines are confusing. But we get someone. The nurse says his results were already in so she read through them. Basically he is having pre seizure activity. It is coming from all over his brain and not in any specific place. She said he is having epileptic activity almost constantly but nothing connecting. Sleep increases this activity but doesn’t change the pattern, but strobe lighting does not induce anything and it doesn’t create a seizure for him. Also hyperventilating him doesn’t produce seizures or changes either.
I said that since we KNOW he has had a major change from 2008 to now, can we PLEASE get in sooner than August. Like before her vacation. You tell me, we will come. The nurse said that the Dr. would call me back the next day.
The next day she totally did call. She was about as happy with me as I was with her. I told her I felt we got the run around. I felt that no one wanted to listen to me that he was different. She didn’t. She said she gave me a few minutes in the hospital and she sees that he has some changes so she can up our meds. And then see us in the office.
I could tell that I was getting no where and she wasn’t listening to me. So I just started agreeing with her. And she said she could tell I was angry and that I was not happy with her. She said I was able be sent to CRS where she is not a provider, but otherwise the others in her office don’t “Share” patients. You see one or none.
My response surprised her. I said that was fine that we would be sent to CRS but I had already declined services at CRS because we have private insurance. She was MAD. Because then she has to see me.
As soon as I got off the phone I called for a different neurologist to see us. We are going to be seeing the same Dr. we had in 2008. But, he has only agreed to give us a second opinion. Which is funny since his will actually be the FIRST opinion because she won’t see us before he does.
The only thing we have done at this point is uped his meds and were told we needed to get in to see our pediatrician about what I feel is a neurological stutter. I KNOW that what I see is neurological. Not anything else. But i am just the mom.
With all the mess I have started a Tyler journal. Everything is being documented. We are writing when we give meds. What we are doing in the day. We are tracking bowel movements, wake and times he needs a down. I will be “THAT” mom and I am ticked. We will figure it out.