A long ago worry resurfaces

For the last year or so, every now and then, about once a month, Janey does a very odd thing with her eyes.  Basically, she rolls them up so high you can only see the whites of them.  This seems to happen more often at night and outside, when she's a bit tired.  It's a very alarming and scary looking thing, but most of the time, she seems fairly unbothered by it.  Once in a while, she does get upset.  One time it happened in the daytime, and she was trying to walk around, but couldn't seem to see as her eyes were turned up.  I sat her down and covered her eyes for a bit until she got control of them back.  We have tried to catch this eye thing on video, but haven't managed to so far, partly because it's often dark when it happens.

Janey had her IEP meeting on Tuesday, another very nice meeting, her last one in junior high.  She will be at a new school next year, high school someplace, and it's hard to say goodbye to the great team she has where she is.  I almost forgot in the midst of the meeting to ask if anyone at school had seen the eye behavior, but did finally remember.  Her classroom teacher (one of my favorite people ever, by the way) had seen it a few times.  

Later that day, I got a call from the school.  Janey's leg was jerking back and forth, and she didn't seem to be able to stop for a while.  It had happened twice that day.  I spoke to her teacher and also the school nurse, and both said they didn't think it was a seizure (which of course is our biggest worry).  She recovered from the jerking and was cheerful and wide awake.  Everything I've learned about seizures has said that after one, just about universally, the child is very, very tired and goes to sleep.  This hasn't happened with Janey, with the eye thing or with the leg jerking.  However, by chance, Janey's annual physical was the next day, so we agreed with the nurse to bring it up.

At Janey's physical, we explained about the eye events and leg jerking.  Her terrific pediatrician asked us some questions, and agreed it didn't really sound like seizures, but did feel she should see a neurologist.  She gave us a referral and said we should see one within a month.  As often happens, when I made the call at home, there were no appointments available until about 2 months, at the start of April.  I put in a call to see if this was okay, and haven't heard, so we will go with the April appointment for now.

When I was talking to the pediatrician, I brought up something from very, very long ago, when Janey was about 19 months old.  She wasn't walking then.  She was just barely sitting up, so obviously her physical development was very, very delayed.  We were referred to a neurologist then, and saw one, not at a hospital but at our health plan's office.  It's hard to remember the details of that visit, but she ordered an MRI, which we got.  And then I didn't hear, and didn't hear, and finally called over and over and FINALLY got a call from the neurologist.  

I remember getting that call fairly vividly, although I think I've tried not to think about it over the years.  The house was very noisy when it came in, with 3 kids doing their various things, so I went outside to hopefully be able to hear better.  We live near trains, so of course a train was going by.  And the neurologist had a very, very heavy Russian accent.  I could barely understand her under the best of conditions.  But from what I could hear, she said that the MRI wasn't normal.  She said something about there being gray matter where white matter was supposed to be, or vice versa.

It's hard to understand why it seems like there was never any followup on the finding.  I honestly can't even remember talking to Janey's pediatrician about it.  Her old pediatrician was, well, not great for Janey.  He had been very good for the boys, but by that time, he had risen in the ranks of the health plan and seemed to have little time.  He also just seemed to be overwhelmed by Janey's various needs.  I think what happened was Janey's physical development rapidly got better at that point, and as she headed into the year that she was two, her best year, we all kind of put the strange finding behind us.  Two was her golden year.  She walked, she talked a lot, she was even discharged from Early Intervention.  She was going to be fine.  And then, of course, around age three, the horrible regression happened.

But I did recall looking up what it meant to have gray matter in the wrong place, or white matter.  I found it was a condition called Gray Matter Heterotopia.  There wasn't much info then, and I think I didn't dig too hard.  However, I remembered something that had said that with girls with this disorder, often they start having seizures in their 2nd decade.  That seemed very far away.  Now, of course, we are in Janey's 2nd decade.  So I mentioned the long ago MRI to Janey's current pediatrician.  She looked up the long ago report, and read me a bit from it.  

The report said there was a good deal of gray matter where white matter should be, but not enough to make a definite diagnosis.  It also said there were changes to the frontal lobe, nonspecific changes.

Looking up Gray Matter Heterotopia now, there is still not a huge amount of information available.  Here's a Wikipedia article. LINK    It's hard to read, emotionally, what is out there. 

Janey has had another MRI since that first one, when she was 11, but that one was specifically looking for a possible tumor connected to an abnormal blood reading.  What I've read said that unless the MRI is specifically looking for the gray matter problem, it might not be noticed.

So---something I had put out of my mind long ago is now, of course, back in my mind.  One of the two medications Janey takes is an anti-seizure medication, prescribed in her case for help with bi-polar type symptoms.  But it could also be serving to mask seizures, her pediatrician mentioned.  Is Janey having seizures?  Is this the next thing?  I know seizures are fairly common in autism.  How does the gray matter issue figure in, if at all?  Is there something we should have been doing specifically for all these years that we weren't or aren't?  What is going on?

Amid a season of many worries, this one is hitting me fairly hard, I must admit.  Hopefully, we will get some answers soon, and we'll do the best we can with whatever we find out.  That's what we've been doing, and that is what we will keep on doing.  It's what all of us living this life do.

Annual physical and a surprise sentence

Janey had her annual physical yesterday.  She's had a fairly healthy year, so we hadn't seen her pediatrician since last January.

The tough part of the visit was the wait.  We were in the waiting room for about 45 minutes.  That's quite unusual, but I guess they were very busy. In the past, this would have been a recipe for extreme disaster.  As it was, it was hard but not impossible.  Several times, Tony took Janey for a little walk, staying near enough so I could call him right back if we were called.  As the room cleared out, and we kept thinking surely we would be called any second, we stayed in the room and entertained Janey as best we could.  It struck me that although part of what's different than the past is that Janey has matured, part of it is that Tony and I just do what we have to do now, without caring how it looks.  For a long time, we sang and danced with her.  I sang Christmas songs, quietly but not silently, and I didn't care if people stared.  And people did stare---especially kids.  I don't like the stares, but they don't stop me any more.  I know Janey confuses kids sometimes. It's hard for them to figure her out.  I less like the stares of the parents.  I want to say to them "Have you never seen a child with disabilities before?  Is is really that shocking to you?  You know, she's a lot more interesting than your little snobby brats!"  Not nice thoughts, but when you've been trying to hold it all together for as long as that wait seemed, you get nasty sometimes in your mind.

Once we got into a room, it was much easier.  We really like our pediatrician a lot.  I'm glad we made the change about a year ago.  The pediatrician that saw the boys was right for them, but I don't think he ever felt comfortable with Janey.  I am pretty sure he saw her as a tragedy.  That is not the attitude I want in someone treating her.  The new pediatrician seems to delight in her, while still understanding the challenges she presents.  She listens well, and she talks directly to Janey.  She did a good exam, and Janey looks healthy.  At the end of the appointment, Janey got a flu shot, which we were not sure how she'd take, but she took it extremely well---not a single protest or scream.  You never know with her.  Hopefully, she won't get the flu this winter as she did last winter.

After the shot, as we were putting on Janey's coat, she said, plain as day, "Can we go home now?"  Tony and I looked at each other in amazement.  That might not seem like a remarkable sentence, but it's the type that is extremely rare with Janey.  Her speech is rarely that direct.  The usual thing she'd say in that situation would be "Want to take the big girl for a car ride?"  or "Listen to music in the car?" or "Do you want salami?" or something else that means basically the same thing, but doesn't come out and say it.  A sentence like the one we heard, direct and grammatical and appropriate and succinct, is very, very unusual for her.  It was wonderful to hear.

As the years go by, we measure success with Janey on a scale that isn't the same as most parents might use.  It's her own scale.  We headed home feeling that we are indeed making progress.  And by we, I do include Tony and me.  We are making progress in being Janey's parents.  And she is making progress in being herself.  And that is a good feeling, something to be thankful for.