Thursday, May 2, 2013

Neurology follow-up

Keegan had a neurology appointment on Tuesday, and I'm still struggling to wrap my mind around it.  It was another one of those good news/bad news meetings that leaves the doctor feeling good but the parents rather torn.  A feeling I should be quite used to at this point, I suppose.

Since it was one of those kind of appointments, let's break it down that way:

Good news:

  • The doctor was very impressed with the progress Keegan has made since we saw him last summer.  At the time, Keegan had just come off another steroid pulse.  He wasn't using much language and was extremely frustrated all the time.  He was hitting himself, and there was concern he was continuing to have strokes or silent seizures.  We did an EEG that ruled out the seizures and repeated his brain MRI, since he hadn't had one since we came home from Boston.  
  • We compared the three most recent scans from June 2011, September 2011, and August 2012.  He counted as many as 10+ areas of infarct, i.e. strokes, but there are NO new strokes in the latest scans.  Very good news!
  • Unless Keegan has another trauma, big MAS flare, or really declines from a developmental standpoint, the neurologist doesn't necessarily think there is an immediate need to repeat the MRI or follow-up with him on a regular basis.  
  • Once again, the biggest compliment the doctor gave Keegan is that he looks nothing at all like what a neurologist would expect simply by looking at his scans and medical history.  He said this last year, and after this year, he said he meant 200% more.  We are so grateful that Keegan has weathered these storms.  Hearing how bad things could be based on what the neurologist sees on paper really drove home our gratitude for God's blessings and protection for our Bug.
Bad news:

June 2011 on the left; August 2012 on the right.

  • It doesn't take a person well-educated in neurology to see the dramatic difference in these two scans.  The 2011 scan on the left was done after we removed the misplaced port out of Keegan's subclavian artery that was likely the source of his strokes.  The 2012 scan was done just before Keegan's 5th birthday.  
  • The two main differences are the size of the ventricles (black spots in the middle) and the amount of hydration of the cells in the lobes.  As you can tell, the scan on the left shows "fluffier" brain matter and obviously more of it than the one on the right.  If you think of the brain as a sponge, Keegan's is rather dried out at this point.  The doctor believes this global atrophy is due to inflammation and increase in Keegan's intercranial pressures during MAS flares and long-term steroid dependency.  
  • Essentially, Keegan's brain is about what a 60-year-old's would look like.  There is no way to fix the damage that has been done so far, but we are doing our best to prevent further rapid deterioration by aggressively weaning his steroids and keeping the MAS under control.  Despite this damage, Keegan has continued to show that he can learn and improve, so there is a vast amount of hope still there.  The neuropsychologist who we will follow up with later this summer will be the one to help us understand what we can expect from Keegan developmentally in the long-term based on these scans.  
Is there much left to say after that?  I'm not sure.  I think the news kind of speaks for itself.  It's not really necessary for me to explain why this information is difficult for us to process.  Even though it is blanketed in such good news, the take-away is still so vastly disappointing.  We are, of course, grateful that Keegan has dodged so many bullets.  Yet, it still doesn't make the damage easier to accept.  We will absolutely turn our focus on the many positive bits of news that we learned.  We will wait patiently for news from the neuropsych evaluation in July.  But more importantly, we will continue to trust that the Lord has Keegan firmly in His grasp and that with hard work and His blessings, Keegan will continue to grow and thrive in the coming years.  

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