Saturday, January 25, 2014

The 'Eyes' Have It

I think I blogged about Hollyn's eye situation last November, but I'm too lazy to check and see what I wrote, so I'll recap.  (That's WAY less lazy, right?)

Last May thru August Hollyn's eyes started not tracking together.  Specifically, her left eye often wouldn't move when it was supposed to, but her right eye was fine.  She was referred to an eye specialist at Oregon Health Sciences University (OHSU) but couldn't get in until November, 3 months later.  Well her eyes were already going back to normal around the time I MADE the appt, so it was long ceased by the time she was actually seen.  The specialist, Dr. Karr, told us he wanted to see her if it started happening again WHILE it was happening - so to have her squeezed in to his schedule. 

That brings us to this month.  Last week it started again.  Dr. Karr's booked solid through April, but I got her in.  And [thankfully] the problem is/was still going on so Dr. Karr could actually assess it.  And the verdict is...

we still don't know.  Like he told me last time, the occurrence seems to be a result of inflamed joint muscles behind her eye.  And the usual cause of this is juvenile rheumatoid arthritis.  However, since she lacks the other symptoms of that, he doesn't believe that's the problem.  So the question is, what IS causing it?  Dr. Karr says it's VERY unusual for this to happen.  Like, she's the first child he's seen with this occurring inexplicably this way.  The assumption is that she has some inflammatory disease, but we don't know which.

Before we left OHSU we were sent for Hollyn to have an ultrasound done of her eyes.  Nothing suspicious showed up (like a cyst or anything), at least within the range of the ultrasound.  There is the possibility of Hollyn getting an MRI, but since she'll need to be sedated for that, it's not being planned at this point.

So the next step is that she's been referred back to her pediatrician for blood tests and "the works" kind of physical.  Dr. Karr wanted her seen pronto for that while the symptoms persist.  There's not much we can do outside of a flare-up.  She's being seen Monday for that, although today I only saw her eyes go wonky ONCE, and it was very briefly.  If the flare-up is already ending it will be very frustrating in a way, although that sounds bad since obviously I want her well and healthy.  Anyway, that appt. is Monday, then she has a follow up in Portland on Thursday to discuss the results.

Pretty crazy.  I'm not especially worried.  She isn't in any pain that she's voiced.  She clearly wasn't in pain as Dr. Karr felt and tested for that in either eye.  Her vision during a non-flare up showed to be great, and even the vision test last Thursday during a flare-up was fine.  She can still see out the eye despite its movement limitations.  So I'm not panicking.  Although it does sound a little concerning to hear your daughter has a "disease".  At this point, we 're just hoping for answers so we can know what to do about it.  And my bucket list now includes finding/getting to AND leaving the Casey Eye Institute without getting lost or off track.  That place is C-R-A-Z-Y hard to find.  You literally weave through old neighborhoods and turn onto roads that look like driveways leading to a private home in the forest.  I can't believe it's the way to get to this place and Doernbecher Children's hospital of all places!  And extra points if you can get back onto I-5 without stumbling through downtown Portland twice.  Anyway, I may be in for some frequent trips to Portland for the next little while.  Adding that to my schedule is not very easy since all three other kids need babysitting at different times (A and B get home from school 4 hours apart).  But here's to finding answers!

1 comment:

Kelly said...

Well, that's interesting. At least she was still doing it so you didn't feel like it was a totally wasted trip. But it sucks to be waiting for answers still.