And The Doctor Said....

I was hoping to get a post done over the weekend to fill you in on the neurologist's appointment but I just never had enough time to sit down and gather my thoughts.

So here it is:

In comparing Lily's two MRIs (one done at 5 months of age and one done at 4 years of age), it appears that the spots of missing white matter are new.  Or at least, they weren't present in the five month MRI.

But.... are they new as in really recent and tied to her irritability?  Or are they new as in one year old?  Or two years old?  Or are they in some way tied to the regression that took place when she was 18 months old?

And the answer is.... no one knows for sure.

ARGH.

So what's the next step for Lily?

Another MRI in two months.

But there is some good news and that is what we'll choose to focus on.

First bit of good news - Lily was tested for Multiple Sclerosis, a condition very much tied to brain white matter loss.  The test results were 100% negative.

Second bit of good news - When people have degenerative white matter conditions, the symptoms manifest themselves in very physical ways, such as falling down frequently, being unable to keep your balance, losing muscle control... things like that.  Lily has absolutely none of these symptoms.  Therefore, the neurologist is very comfortable in saying that Lily does not have a degenerative white matter condition.

We are praising the Lord for this report!

Because of all this talk of white matter, I have spent some time on the Internet (the source of all things true and accurate when it comes to medical information!) and learned just enough to be dangerous, I think.

But one interesting thing I did pick up that was confirmed by the neurologist as being true and accurate is that all of us can have temporary spontaneous white matter degeneration and regeneration.

During a time of acute illness, a person's white matter can degenerate and as they get well, it can regenerate.  All on its own.  All perfectly normal.  And all without anyone knowing.  Because most of us don't run out and get an MRI every single time we get sick.  But odds are that when we are sick, our brains look just a little bit different than usual.  Interesting, huh?

I say all that to say that we may have just caught a picture of Lily's brain when something is going on that may have nothing at all to do with the brain.  And the only other MRI we have to compare it to is when she was recovering from open heart surgery, a time that her brain may also not have looked "normal".  Make sense?

So the next MRI will take place when Lily is perfectly healthy and displaying no unusual symptoms of any kind.  Then we can assume that the picture we get that time will be her "typical" brain.  Or as "typical" as a child with her medical history can be!

OK - enough brain talk.

How is Lily acting now?

I'm glad you asked.

Most of the time, things appear to be mostly back to normal.  Or as normal as things get around here.

Lily is still having one or two unexplained crying spells a day.

Something will set her off and she simply cannot be soothed.  She will want you to pick her up and then immediately will want you to set her back down.  She can't seem to get comfortable and can't decide if sitting still or moving around feels better.  So she does some of both.  And sometimes she's angry while it's happening and sometimes she's simply sad.  It's quite frustrating for everyone and hard on a poor mom's emotions when she can't calm her child.

This week, I'm really focusing on what possible triggers, if any, might be setting her off.  It tends to happen for sure around 6-ish in the evening so I'm going to be watching closely for signs of discomfort or frustration or sadness or anything to see if I can get some clues.

Ryan even called the After Hours Clinic yesterday to ask if maybe Lily could've shoved something up her nose and it's been missed through all of this. (She's discovered her nostrils in the past month or so and is fascinated with them.)  The opinion seemed to be that if it was something hard, it would've shown up in the CT scan.  If it was something soft, like food, it would be really stinking now.  I've never had kids who put things up their noses so this isn't familiar territory.  Anyone have any thoughts on this?

OK - my fun little blog is starting to sound like a medical journal.  I promise to share something cute and totally non-medically related before the week is out.

Enjoy your Monday!