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.

Grateful as well as angry --- a pneumonia story

It's Friday morning, and Janey is home and fever-free, and I am finally sitting down to try to make sense of the last few days.

When I last wrote, Monday, we had been through a clinic visit and an ER visit, without any answers. Another clinic visit Monday night, another temp at a low point just then, another wait and see.  Janey's fever kept getting higher as Tuesday rolled along, even with Tylenol.  She had an appointment set up for 3:45 at the clinic, but when I took her temp, it was again showing up as 106.  I called the clinic and asked if we could be seen sooner, and they said to come right in.

Finally, we saw Janey's own pediatrician, a doctor I like more every day.  Before she came in, the medical assistant took Janey's temp under her arm, and it showed up at 99, which I knew was not accurate.  Janey was screaming and moving around.  Then a couple people came in and took a nasal swab for flu.  Again, we had to hold her down.  When Janey's doctor came in, I pulled out the crazy old forehead thermometer and took Janey's temp again---and again, it showed 106.  The doctor was startled.  We all agreed it was probably reading a little high, but at her request I took my own temp with it and that was normal.  She then took Janey's underarm temp, with us all holding her down, and it showed 103, which translates to 104 as you add a degree for under the arm.  Finally, someone was seeing that Janey really did have a high fever.

At this point, Janey's skin looked odd---mottled and pale.  She was coughing an increasingly deep cough.  The pediatrician made the call to have her taken to the ER by ambulance.  As we were waiting for transport, the flu swab came back, positive for influenza type A and B---both types.  The ambulance showed up and we took a siren-filled ride to Mass General.  Freddy was with us, and he rode in the front.

So---back to the old Mass General ER, site of absolutely no help the previous Saturday night.  But I knew it was the gateway to great care, if we got admitted.  The plan initially was not for that, though.  A hugely arrogant seeming doctor came in, announced he was the "big boss" and did a quick exam of Janey, and left saying in a sing-song voice "not so bad, not so bad"  The plan was to have a chest x-ray, give her some fluids, do some blood work and send her home.

Janey cooperated for the chest xray in a way that was truly amazing.  She had to do things like hold onto a bar above her head and lean forward and scoot up on the bed, and she did all of them.  I was shocked at her understanding and cooperation.  The chest xray came back showing she had pneumonia in her lower left lobe.  The blood work showed a low white blood cell count.  And after a change of shift to a different "big boss", Janey's fever started to come back up.  She was shaking violently.  It wasn't time for more Tylenol or Motrin yet.  And finally, around 9, we were told she would be admitted.

It took until about midnight to get into a room.  The time in the ER felt like purgatory.  Freddy left around 5, Tony got there around 7, but there was only one chair in the room, and he had barely slept the night before and worked all day, so he went to the car to sleep.  He came back in around 10 as we waited for a room.  Janey was looking sicker and sicker.  Finally, we were taken up to our room.

Going back to the pediatric floor felt bizarre.  We had spent nearly a month there last May with Janey's burst appendix.  It felt like a homecoming in a way, one we had never wanted to come back home to, but I knew finally we would get some good help.

That night, Janey's fever spiked very high again.  She was put on IV antibiotics.  The next day, we were able to talk for quite a while to the same doctor that had been the one who broke the news to me that Janey's appendix had burst, last May.  He, as well as everyone there, was great---listening to us, being respectful and kind to Janey, taking into consideration her autism at all turns and giving her wonderful care.  Finally, on Wednesday afternoon, she had her last fever.  Yesterday, it was decided what antibiotic to send her home on (one that says in the instructions "used to treat a variety of bacteria infections as well as anthrax and the plague", so it's pretty hard-core!) and in the afternoon, with Janey looking incredibly better, we were released.  Strangely, when they had repeated twice the flu swap, it came out completely negative, so the conclusion was she had some unknown viral infection, but the main problem was the pneumonia.

I have been thinking non-stop why, even after the whole appendix ordeal, it took from Saturday till Tuesday for Janey to get effective care for a very high fever and pneumonia.  Part of it is just that I've realized it often takes anyone a while to get treated.  So many illnesses resolve on their own, and I almost feel like it's a plan in the medical world to let things ride a bit and see if they get better.  But part of it is her autism.  I pinned it down to two crucial events/reasons...

The first was the Saturday visit to the urgent care clinic, when Janey resisted her temperature being taken under her arm and the decision was made to not take her temp at all.  I KNOW her temp was extremely high then.  Her pulse was 250, which even if that was somehow off a little, is extremely high, and she felt to be burning up.  In defense of the doctor that saw her there, she did realize Janey was pretty sick, and put her on antibiotics (ones that weren't strong enough for pneumonia, we were later told, but would have treated strep throat)  But I think if she had had a good temp taken, it would have shown a high enough temp that we would have been sent to the hospital then.  The feeling was---don't force her to get her temperature taken and "upset" her.  Well, that is my fault.  I knew it needed to be taken, but I didn't insist.  We all fall victim to not wanting to upset her.  But---the same standard has to be used for Janey's medical care as any other child's care.  If someone shows signs of a terrible fever, they NEED to have their temperature taken.  Maybe not at home, but it needs to be taken in a medical office, and recorded.  That was the first fail.

The second fail was the first ER visit.  What a joke that visit was.  Janey's fever was down, and I was not listened to.  I tried my damnest to voice that Janey does not show illness or pain normally.  I wanted blood done, I wanted a chest xray.  But the arrogant doctor (a different arrogant doctor than the second time), despite what I was saying and despite the fact that the ER last May had missed the first time a burst appendix, which you would think would make them extra careful, seemed to assume that I was being an anxious parent, that Janey was just plain fine.  That is where the autism comes in.  Janey was ACTING fine.  A typical kid of 11, after being terribly sick all day, would be able to explain how she felt, how her lungs felt, how scared she was.  But Janey, when she felt better, acted fine.  She wasn't feeling hugely sick right then, and she has no understanding that that might be a temporary lull.  And I didn't press hard enough, I guess.  So---it took from Saturday until Tuesday night for her to finally get the right antibiotics to start truly helping her.

I am left feeling a few things.  One is angry.  I am angry that yet again, Janey's autism prevented her from getting timely care.  Another is grateful.  We love Janey's new pediatrician, and once she was able to see how sick Janey was, she acted very quickly.  She communicated with the hospital and with me, and she was firm in what she said Janey needed.  We are also grateful for the wonderful care on Ellison 18, the pediatric ward at Mass General.  Many of the doctors and nurses remembered Janey well from her last visit!  It was great to have Daisy as a nurse again (shout out to you, Daisy, who sometimes reads my blog!) and the other terrific nurses.  We hope we'll never be admitted to a hospital again, but if we are, it will be Mass General, even if we aren't crazy about the ER.

And now, a day of rest.  Tony is home to help with Janey---another week of mostly missed work for him, but luckily he has enough time saved up.  I could write on with more and more thoughts and happenings of the last few days, but for now, I'll close, and take another nap.  And thank all of you for your kindness on the Facebook page---your thoughts, prayer and comments are what keep us going a lot of dark days.

The New Pediatrician...Autism at the Doctor's Office

A few months ago, I made the tough decision to switch Janey to a new pediatrician.  Our old pediatrician had been with us since the day my oldest William was born.  He helped us with William as a little preemie, he guided us through both boys' asthma, and he was at the end of a number of desperate phone calls at various times in my years of raising the kids.  I liked him a lot.  But for a number of reasons, he wasn't the right doctor for Janey.

The most important one was just in terms of ease of transportation.  He was at a clinic in the city, one I couldn't drive to.  It was very easy to get to by public transportation, but with Janey, that's not always practical.  I needed a doctor I could drive Janey to easily, so Tony wouldn't have to miss work.

The other reason, though, is that I never quite felt he felt comfortable with Janey.  I am not faulting him for that, at all.  Janey is tough.  He was professional with her, but I don't feel like he truly got her.  And that's okay.  Not everyone is able to deal well with a child like Janey.  I have realized that over the years.  Some friends fall away when faced with the reality of her.  Others step up to the plate.  To be brutally honest with myself, if I had not been thrust into the world of parenting a child like Janey, I might be one of those who didn't deal well with it.  And so I try to understand that not everyone can.  But after Janey's appendix rupture, I realized it was vitally important for me to have a pediatrician who felt comfortable with her.  Her old doctor had nothing to do with diagnosing (or not) her burst appendix--that was all done at the hospital--but I realized I needed a doctor who felt comfortable enough with Janey to tend very closely to her physical health.

So how did I pick this new doctor?  I'd like to say I did all kinds of research, and interviewed doctors, and all that.  No, instead I picked the clinic I'd like to drive to, looked at the pictures of the pediatricians with openings and chose the one I liked the looks of.  That's how I roll.

We took Janey after school last night for her physical with the new doctor.  Things in the waiting room did not go well, to say the least.  Janey thought she was going for a ride, a nice long ride with lots of music, although we of course told her she was going to the doctor.  But when the reality of that hit, she screamed.  She screamed for the whole half hour it took us to be put in a room.  Then she screamed in the room.  She stopped a little while they took her height and weight and blood pressure---she likes that.  But she resumed screaming after that.  This wasn't the fault of the office.  Monday night is a busy time in a doctor's office.  I hadn't realized that.  And they were very sweet to Janey as we waited for the doctor, but Janey was not happy to be there.  We kept reassuring her this was NOT the hospital, she WASN'T going to stay overnight---but I am sure there was some flashbacks for her that weren't pleasant.

And then the doctor came in, and I somehow knew immediately we'd gotten lucky.  I liked her right away.  I loved how she addressed Janey directly, asked what she liked to be called, said she was sorry sincerely for the wait, noticed within a minute the main thing I'd been worried about (that Janey's spine seems curved), examined Janey quickly but thoroughly, was there for any questions, and emphasized over and over that we could call her about anything, any time.  She was warm and caring and just exactly what I had been looking for.

Janey calmed down while she was there and took to her right away, which is not the case with everyone, that's for sure.  Everything went well, until of course shot time.  Somehow Janey had gotten a little behind on shots, and in fact had never somehow had the 2nd chicken pox vaccine she was supposed to get a while ago, so she needed 3 shots.  Two nurses came in to give them to her.  We held her down, probably more so than at first the nurses thought we needed to, but the minute she got sight of the needles, she screamed and tried to bolt, with amazing force and suddenness.  They were startled!  We managed to get her held again, and she didn't seem to mind the actual shots at all.  We left feeling good about the appointment, although drained.

So now, we have to get an xray to see if Janey has scoliosis.  I hope she doesn't, of course.  We also discussed various options for dealing with PMS, if that becomes a problem---we've just started down that whole road.

I'm glad we made the doctor change.  It's hard sometimes, not just with doctors but with people in general, to accept that not everyone is going to embrace Janey, but it's a fact of life, and I understand it.  It's up to us to keep working to have as many people in her life as we can that do embrace her.

The hardest days, the hardest decisions

This is a hard post for me to write. I've been putting it off and even thinking about just giving up this whole blog thing. But I want to be honest and tell about the last week or so.

Starting about a week ago Thursday, Janey entered some kind of incredibly tough phase. She was literally screaming all day and most of the night. I don't mean fussing, crying off and on, I mean screaming, hysterically, all day, all but a few hours of the night. She would stop only to say things like "I WANT MAMA" even if I was right there, "I WANT A BABA" only to toss it aside if we gave her one "I WANT A VIDEO" only to cry at anything we put on. We were getting no sleep. We were literally in despair, trying to figure out how to make her happy. It got worse and worse and worse as the days went on. Finally on Wednesday, we got a call from the school that they thought she was sick. I knew she wasn't sick, physically anyway, but I knew how it could seem that way. I picked her up early, and that was the worst day of all. She was so upset that whole afternoon and night, and slept almost not at all. Tony and I were just looking at each other without a single idea what to do next. The boys were unable to do homework, we were not able to have even a minute to talk as a family, and meanwhile Janey was in such mental pain it was heartbreaking to watch. Tony stayed home from work Thursday---he hadn't slept. We called her pediatrician first thing---to rule out anything physical and to just ask for any help he might have. She was so upset in the waiting room that nurses kept coming out to reassure us we would see the doctor soon, even though it was only a few minutes wait. When her doctor saw her, he was visibly shaken, and he's been a doctor for about 30 years and has known our family since the day William was born. He did an exam---as I thought, her ears and mouth and lungs were all fine. He said he thought it was possible she was hearing voices---based on how she was holding her ears and just based on a hunch, from being a doctor for a long time. I've never, ever seen him go out on a limb like that, and I am inclined to think he might have been right. He put in a call right away to a psychiatrist, and said he didn't want it to be more than 24 hours before she was seen. We went home and tried to comfort her, without success. Finally, we got a call from him that evening---he'd talked to the psychiatrist, who will see her Monday, and the psych. recommended we start her on medication---Risperdal. I knew a lot about Risperdal---it's the drug I figured would be recommended if one was. And it was exactly the drug I was completely opposed to for a long time. But the week in what could only be called near-hell, for both Janey and us, made me realize that it was my own reasons, and not the best interests of Janey, that was keeping me from being open to it. No-one, NO-ONE, could live long term the way we lived that week. And so I said, yes. We will try it.

Tony picked it up that night, and we gave her her first dose that bedtime. She went to sleep after about 45 minutes, and slept 6 hours---much longer than any recent night. Then she woke up, but didn't scream, for about 3 hours. The next day was mixed. She had a long time without crying in the morning, but by afternoon was back to a great deal of screaming, and the evening was very tough. We gave her the second dose that night. She slept from 8pm until 4am, then woke up screaming. She cried for about 2 hours. Then....no crying all day. NONE. In fact, a great deal of smiling--a happier, more relaxed Janey than I think I have ever seen. I was holding my breath. I really deep inside did not WANT the medication to work, so I could say I tried it and it did no good. But it would be impossible not to notice the change today. We even went to dinner at fast food Mexican. Janey was happy the whole time, and happy to go to a store afterward, and happy in the car, and talkative, and answering questions, and just plain RELAXED. I have never really seen her relaxed.

I don't think it will last. It's too much for a medication to do. But Tony and I both said it has taught us something valuable---to see that autism, or retardation, is not the thing to fear. If Janey can be happy, can enjoy life, can have normal emotions and can feel what it's like to be relaxed, then all the rest we can take. It doesn't matter much if she ever reads, or "passes" as normal. If we can all be together as a family and enjoy each other's company, then all the rest is icing on the cake.

I still don't like the idea of giving her medication. But I know people sometimes need medication. I would be very unhealthy without daily thyroid replacement, and Carrie would not probably be around at all. Tony can't live without insulin. Freddy would be gone without his asthma medication, quite literally and heartbreakingly. And so perhaps Janey too has something missing in her makeup which medication can help with. I'm not sure yet. But I can almost hope so.

Manic nights

The last few nights have been what I call manic nights for Janey. She has spells of those now and then. She sleeps very little, and spends large parts of the night running around the house, singing to herself, turning lights on and off, waking us up. If we try to contain her in bed, she screams without stopping for hours. It's almost impossible to deal with these nights. I feel totally hung over after one, as I do today, and they come in groups, and tonight shows all signs of being another one---it's close to 9 and she is not a bit sleepy acting, and that is after sleeping probably 2-3 hours last night. She was fine all day, cheery and happy mostly. It's times like these I do consider seeing if she really is bi-polar, and giving in and getting medication. I talked to her pediatrician about it. He is not terribly interventionist, which I like, but he said that some current medications aren't too bad, and that bi-polorness is treatable and if she gets worse, it might be worth really trying to get it treated. I am still skeptical. She is only 5. Just recently I've read about how the new DSM isn't going to even recognize bipolor disorder in kids. I think she's cyclical, for sure, but there might be other reasons. Maybe it's a vicious circle as when she has one of those nights, we are all thrown off and half crazed from lack of sleep, and that affects her into the next night. Sometimes the manic laughter is almost as hard to take as the crying. Some days and nights like this the future looks long and very, very tiring.