First of all, nothing has really changed in Austin's condition. There are some issues that I tried to blow off because I did not want to see them. We did not find anything new at our appointment, we just were more informed and the veil I was using to conceal the unwanted was lifted.
Unfortunately, Austin's EEG showed no improvement. It only further confirmed how much he is struggling with. He has what they call "myoclonic seizures", some of the most difficult to control. I'm not going to get into very much detail on that, just enough to explain what we are up against. In fact, I still consider myself uneducated in that area...although I'm trying to learn more. The fact that his seizures have not been controlled by ACTH, Zonegran, or Keppra is a big concern. It indicates that we may be dealing with "intractable seizures", seizures that are difficult to control with anti-epileptic drugs. However, I have not accepted that just yet. There are still several options we have yet to try. It may just take longer to find that right dose and/or drug. Vigabatrin is still an option, even though the doc did not want to give us false hope that it will work.
Now, the hardest part. We have loads of new testing we will be doing. We had to repeat a genetic test to rule out a genetic disease as the underlying cause (it will take several months to get the results). We had to repeat because the first came back inconclusive. Second, we will also have a repeat MRI to check his brain again. I was misinformed by his neurologists earlier on about this one. It was done while Austin was in the hospital the first time. It came back normal. However, we were just informed that an MRI done that early in life is unreliable. He will also have a lumbar puncture (a spinal tap to test the spinal fluid) following the MRI. I guess those results will determine which direction his treatment will go. These tests are crucial. We want to rule out these possibilities and we do NOT want to find what they are looking for in them. Anything found can negatively affect his prognosis. Unfortunately, I have to add that his doctor implied that we may. I pray that we don't. A truly idiopathic case (meaning there is no known cause) has the best prognosis of all. Especially when the child is otherwise normal (developmentally)...AND has a quick response to meds.
We have two of these factors working against us right now...and one more to be determined -the testing. I have raved about Austin's development, I know. And, his gross motor really is something for me to rave about. But, I have left out all the other details. I have not shared much of my concern about his other skills -except maybe his babbling. He has not made much progress socially/verbally/communicative since he was diagnosed nearly 5 mos ago. I blamed it on his meds. It's possible some of it may be due to the meds, but not all. I wanted to blame it on everything but what it is. Regardless, Austin is taking steps...a truly miraculous milestone in my eyes, and I'm not trying to take away from that by pointing out negatives.
The spasms continue. We increased the Zonegran by 50 mgs/day and decreased the Keppra by 2mL/day and are adding B6 as well. We will have him completely off the Keppra by Friday...it was a joke to begin with, but that's another story...maybe I'll share that one later!
I'm trying not to put a negative spin on things here. Truth is, it's not all as negative as I may sound. There's still a lot to be determined and so much can change over time. It's just far more serious than I let myself believe or accept. I knew that this diagnosis of IS was going to change everything from now on, but what I didn't realize was that it is going to be this hardest battle we will ever face. It is going to take all the patience, persistence, faith, prayer, hope, and love to get Austin through this. I'm not prepared to do anything less than what it takes...regardless of how much hope the doctors think we have.
There is so much more to say, but I think this post is long enough for today. Thanks for all of your encouragement and prayers! I will definitely keep you all posted on how he responds to the latest increase of meds.