I started the adventure of finding a new neurologist with what seemed to be the unrealistic hopes of finding a doctor that truly cared. Boy, did we get lucky!!! The nurse was fabulous, and the doctor was even better. He spent TWO hours with us alone just in the room going over paperwork, answering our questions, and giving Jude a check up. He checked his vision, tracking, hearing, looked in his ears, checked his skin, did a full family history, and more. He said he ultimately believes that Jude has Infantile spasms mixed with a tonic motion. This is aggravating news for us because we have been treating him for a different type of seizure. Although the spasms can change, and Jude's spasms could look different and could have been hard to catch. He pointed out to us what I had said before that the other doctor noted that Jude's EEG had confused him, and he could not be sure of the diagnosis. Yet our issue was our next appointment with him was in five months!!! This doctor got his two hour eeg out and explained the lines, and what they meant. He showed where Jude's brain activity would peak several times a second, and said "that's good!!". He then showed us flat lines and well anyone knows any time you get a flat line it isn't good in a heart or a brain. He said "that's not good, and if it continues he could never develop". We may never be able to do anything about his flat lines but this doctor said "I treat seizures and spasms aggressively because he cannot have the best shot at life while the spasms aren't under control. That's what I am here to do, regardless of his disabilities to give him the best shot at life". He then said just based on his check up he thinks Jude uses one side of his brain more than the other. "Yes yes" I shouted, "that's right one side is better than the other side". The eeg had shown that before, and he could tell that Jude's left brain was affected more from the stroke and therefore his right side is affected on the outside. Jude did track the doctors red bag on his strong side, turned towards noise on his strong side, and more. I was very pleased with Jude, and the doctor was too. He said "there is always hope don't let anyone tell you otherwise". So the doctor wants to take him off the medications the other neurologist had him on. Therefore, we are checking into medical city this Friday for a new 2 day EEG, and to be weaned off the pheno and topamax. They are then going to find the best new medication based on the EEG. The doctor asked us several times if we had any questions, and handed us his card telling us to call any time of day or night if we need help. YOUR HIRED! HIRED I SAY HIRED! He may not ever can cure Jude, but he has a heart and he listened. Mike turned to me and said he felt like he got a piece of himself back, and teared up. He said he just wanted to know that if Jude left us at some point he did all he could for him. Sooooooooooooooooooo I may be spending my birthday in a hospital, but it will be with Jude and SO SO worth it. I got the best bday present a doctor that listens.
I know this blog is very rushed, and it may not make total sense. I am in a hurry as ECI is coming. This will be my first session with ECI being here because I am always at work. It has been a very busy day off work. So if you have any questions as a way, and I will update more later. I will update from the hospital this weekend too.