The incredible neurologist we met here, Dr. Slopis, is unfortunately not one we can transfer to. He works at MD Anderson with the pediatric cancer patients. He does rounds here only a few times a year. I believe it was a blessing to have had him as our neurologist during this hospital stay. God does cross our paths with others for reasons. He suggested we transfer to the epileptologist that has been reading Jace's EEGs. She is actually who his neurologist normally passes you off on to when the seizures prove hard to control. With Dr. Slopis' help and advice we are going to transfer to the epileptologist smoothly without having to deal with Jace's neurologist we were going to before. It breaks my heart that we can't use Dr. Slopis BUT I am very thankful we are not having to see him because of a cancerous brain tumor! The fact that he recommends the epileptologist weighs a lot and I hope he is right about her.
After speaking with Dr. Slopis, we feel like we understand the plan that the neuro team seems to have for Jace. We are currently on Banzel and have been increasing the dosage all week. Tonight we will increase it to the max amount that can be given for his age/size. We will see how he does over the rest of the weekend and then do another routine (20 min.) EEG on Monday. If they see no improvement on the EEG then we will try another medication, Vigabatrin. This is the medication that comes with the risk of peripheral vision loss (small chance over long term use). We want the EEG on Monday to show the brain settle back down and show only a focal area of activity. Past EEGs showed that the area of Jace's brain that has the tuber (left frontal lobe) had abnormal brain waves. The latest EEGs show the activity dispersing all over the brain, or what they call generalizing. We hoping at the very least for the Banzel, or the Vigabatrin should we have to go to that next drug, to suppress the whole brain from firing off and slow it down to see that there is indeed a focal point coming from the tuber. If this is the case then we would discuss the possibility of surgery. As scary as it can be, surgery may be the answer to becoming completely seizure free. If that route is taken, Jace would have to remain on medication for a period after surgery to be sure there are no more seizures and then eventually weaned off, never having to take them again! We were told that if surgery was the route we would have to take then it would not be a long drawn out months of anticipating. It would be something they would prepare him for within just weeks. The only issue the neurosurgeon would have with Jace could possibly be his size. Dr. Slopis thinks his size would be appropriate for the surgery. The anesthesia is the concern but with Jace being "wide", as he put it, is a good thing (that's a first LOL).
The neuro team is pretty positive about Jace's prognosis at this point. For a 36 hour period of time he was saying words he had stopped saying, he was waving bye bye correctly, and was just coming back to the Jace we lost slowly over time. They said the fact that he is doing this stuff that seemed to have been lost means that he hasn't actually "lost" it - its just not able to come out with his brain fritzing the way it has been. They said that it will take a few days of no seizure activity to really see him come around to being himself. I can't wait for that day!
Dr. Slopis also discussed with us about the two roads we may be traveling with Jace, either Infantile Spasms (IS) or Complex Partial Seizures (CPS). Complex means a change or alteration in consciousness and partial means that is coming from a partial area of the brain (or its focal). We would ultimately want the CPS road taken. At this point the IS road is not what we are traveling. The EEG would show hypsarrhythmias and right now it doesn't. Unfortunately, IS can start out as partial seizures but then progress to them. Normally they start out as IS and that is just what they are. At this point we do not know what road Jace will take. Neurology is so unpredictable. I wish it was a simple diagnosis, straight forward treatment and an easy to determine prognosis. Having the unknown of how much Jace may have been affected or how he will be affected is the hardest part of this. He is so young and he can't tell us anything. The only way we know if he is in a seizure is by an EEG, besides the head drop episodes.
Starting at 3 am this morning he started with his episodes again - every 2-3 hours apart. Its so hard to see your baby going through this. The tears are the hardest part - he doesn't cry but gets tears in his eyes. He gets very agitated with each head drop, tears up, and is overall fed up with them. He even starts to pinch, grab and squeeze anything he can get his hands on....I have the bruises to prove it! And when he's not trying to pinch, grab or squeeze, he attempts to bite something......when I am holding him that just may be my shoulder - OUCH! He isn't doing any of this on purpose per se but out of frustration. The poor guy is really affected fully by his episodes.
Today has proven to be a bit difficult for me emotionally - I am doing a pretty good job at keeping it together so far. But, I think I am reaching my limit of holding it in and being strong. I can't break down and fall to pieces. I have to be 100% to advocate for Jace and make the right decisions or make sure the doctors are making the most appropriate decisions.
Besides the medical stuff, I have other stuff on my mind as well. What do I do about work? I can't just leave Jace at the hospital. What about the financial part of all this? So far this year we have reached the max out of pocket and that amount is a very large number. How much am I making life difficult for those helping us out? I can't just expect someone to care for our dog and home for extended periods of time when they have their own homes and lives. Then I worry about JB's feelings and trying to be there for him as well. I can't expect him to not have feelings about all of this. I hear his fears and they are legitimate and so I can't necessarily help him feel better about them. I can't make promises that Jace will be fine and go on to a regular school, play sports and not need any help. I can't promise that he won't either. Are people annoyed with the updates? I worry if I should even update the blog.....I don't want to come across as wanting attention. I want to be able to get the info to family out easily and most efficently. I do feel better after typing out what we have been told and I seem to understand it more once I get it out on "paper." All this stuff crosses my mind and most of it is just ridiculous. I know this but its how I feel. Anyone in this situation would feel similar...I think.
On a positive note, Jace's "eye boogers" were better today. He didn't wake up with his eyes all crusted closed. I am praying that is the last we see of the crusty eyes.
I am hoping Jace naps a bit longer - I would love a short nap right now as well.
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