EEGs and MRIs

So I guess I should spend a short time here talking about how Coleman is actually doing.  After last year’s update, things continued to improve, albeit slowly.  Coleman had perked up again, and although it was inconsistent, he seemed to be back on the happy track.  We had a decent summer, and at least one day on the cape, he was back to his old happy self, standing neck deep in the water and laughing, thrilled as the waves washed over him.  But like what seems to be a now-consistent pattern, the recovery seemed short-lived and before we knew it, Coleman seemed to be sliding back again.  This time, though, there was something new. 

In addition to the mood change, heightened OCD, and general joyless persona, he was showing signs of what looked like seizures.  He would lift his gaze suddenly and stare into space.  Or quickly look up, then down, then around, as if his eyes were following a moving light beam.  Except there was no light beam.  “What are you looking at Coley?” I asked him.  “Do you see something?”  He didn’t answer, just continued to stare at the same spot.  The episodes increased in frequency and we caught them easily on video.  I studied the videos over and over.  I knew I had to call Dana Farber.  But I had an already scheduled appointment a month out with a new PANS doctor at Mass General and I wanted to get his opinion of the videos before anything else. 

We already knew Coleman had PANS from our appointments with Dr. Bock in New York.  But my pediatrician had been on me to get another opinion, and she was able to fast-track an appointment with a renowned specialist at Mass General so I took it.  I knew that motor and vocal tics were hallmark signs of PANS flares, and in addition to the seizure-like activity, Coleman had suddenly started this vocal thing that I can only explain as a sort of a long, steady murmur or gurgle.  So I was thinking that this all went together and the seizure looking things were really only a PANS flare and nothing to get worked up about.  The appointment was interesting and in the end, the doctor agreed with Bock about Coleman’s PANS and felt he was certainly in a flare.  And while he prescribed a new anti-inflammatory medication to try to help, he agreed that due to Coleman’s complicated medical history, a consult with Dana Farber would be wise. 

We go annually to visit Dana Faber for follow-up for Coleman’s Leukemia.  The appointments up to now have been wonderfully uneventful.  “How’s Coleman doing?” and “Do you notice anything unusual with him?”  I notice a boatload of things unusual with him but I know that’s not what she means J  “Nope, he’s great” I say.    When I called in December after the MGH appointment, I simply said   “I’ve noticed something unusual.”   They took us in immediately. 

I knew before I even showed up that they would want to do an MRI.  Which was why I saw the PANS doctor first, hoping for a pass on that recommendation.  I knew that for kids that have had the amount and type of radiation that Coleman has had, the risk of developing a secondary cancer, a brain tumor, begins at ten years post-treatment.  And increases each year thereafter.  Coleman was eleven years post-treatment.  Dana Farber ran labs first, and for the first time in many years, I was truly nervous as I waited for the results.  But they came back normal which, to me, was everything.  Still, given the timing was so closely aligned to time they would expect secondary issues to arise, they wanted to do an MRI to rule out any growth.  They agreed, however, to a consult first with Neurology. 

We had to wait several weeks for the neurologist, during which time it seemed the new medicine the PANS doctor had prescribed had begun to work.  Some of the other PANS signs seemed to subside or at least lessen and Coleman seemed to be getting happy again.  Yes, he still was having the seizure looking things, but they were less frequent and certainly less intense.   And the vocal tic thing had also lessened, reserved largely for bedtime only, which affirmed for me this was a tic of some sort. Unfortunately, when we did get in to see the neurologist, she agreed that the videos were concerning and given the proximity to the ten year mark, confirmed the need for the MRI.  She also recommended a 24 hour EEG.   

 A couple of weeks later, Coleman became quite sick with a virus.  He was vomiting and completely down and out for about six or seven days, narrowly avoiding the ER for dehydration.  But do you know what?  During that time, all of the tics stopped.  No vocal tics and no head tic/seizure things.  Zero.  And although they eventually returned when he recovered, they came back again with less frequency and intensity than before.  So you can see why I can’t help but feel that this is all PANS related and not a bigger, Dana Farber issue, right?  I’m feeling mighty optimistic that this is absolutely nothing to get worked up over, and you should too.

The EEG appointment is first – it’s not until May so I’ll have to fill you all in next year on how it goes.  But I can tell you that Coleman will need to let a technician put wire leads all over his head and he’ll need to keep them on for 24 hours.  You read that right.  I’ll bet you’re laughing as hard as we were at our house when we heard that.  I think I can safely recap now how that appointment will go:  Not well.  J