Monday, July 25, 2011

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.


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!


  1. Lana, you're such a good mom and so proactive and I know that this thought of "one more thing" to deal with is probably hard on the emotions. I'm praying not only for Lily but all of your strength as you continue to work through what she might be dealing with! And prayers that it's nothing and will resolve itself on its own!!!!

  2. I think the neurologist's report sounds encouraging, so I rejoice in that and keep praying for all of you. Lily is one loved little girl.

  3. Lana, two of our kids have shoved objects up their nose. One required an emergency room visit, restraints and extraction tools that would make Tim the Tool Guy drool. The other, I was able to plug one nostril while he blow the object out. He will never store anything up there again. All that to say I can't imagine something being there without it being a constant irritant.

  4. Thanks for the update. Still praying for you and Lily. I know it is a lot emotionally for a mom, but you are so good with Lily and really take measures to observe closely and try to connect the dots. PTL! for the encouraging reports, and we will pray for that next MRI!

  5. Lana, I so hurt for your heart as you see Lily sad/upset and are unable to help her. It was just past 6:00 when I read your post, and I stopped to pray. I will do my best to pray at 6:00 every day since this is a time when you see a consistent pattern. Related to the other reports, PTL!

  6. Lana,
    I join you in praising God for the positive. I also join you in asking God for answers and for relief for sweet Lily (and her sweet momma!).

    Lastly, my mother ALWAYS sent me to a friend's house with "Say please and thank you," and "Don't put beans up your nose."
    (Story goes, when my mother was young, her friend put a bean up her--the friend's--nose and because of the moisture and darkness of her nasal passage, it *supposedly* sprouted...)

  7. Thanks to all of you for your kind words and prayers. The neuro report is definitely positive and that makes the two month wait for the next MRI much less worrisome.

    Mary - Praying at 6 is a great idea!

    Linn - I'm hoping for no hospital but I guess that depends on what (if anything) is up her nose. The more tools, the more chances I'll have to step out!

    Elizabeth - Maybe that's where I messed up. I never specifically told Lily not to put something up her nose. I just kind of thought it went without saying.... :) We'll see if she thinks the same way at 1 today!

    Whitney & Teresa - Your words made me feel good!

    Amy - When I was up last night, I think God told me you're not supposed to move.... Or maybe that was just my selfish thinking. Going to miss your sweet family! Keep us those encouraging words - I need them!


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