This and That

Sometimes I wait to write a blog entry until I have one subject I deem big enough to write about, but this time, I've got just a little of this and a little of that.

Last Friday, Janey had an ultrasound as part of the tests she's having to try to figure out why she, after just getting it once really, has stopped getting her period for the past two years.  After asking around, it seems like this has nothing to do with autism or her other challenges---it's something else.  We aren't that alarmed or worried, but it's something we need to eventually figure out.  Blood tests shows she makes almost no estrogen, which is quite unusual.  Otherwise, there isn't a lot up.  They even made sure she has two X chromosomes, which she does.  I was dreading the ultrasound badly.  There is no real way to prepare Janey for any medical procedure, although I tried, telling her they were going to put lotion on her stomach and then "mush" her tummy a bit.  Of course, she screamed when they started.  But I liked how the technician handled it all.  She talked in a comforting way but just kept going, while Tony and I held Janey in place.  The noise attracted a passing doctor, who also looked at the ultrasound and said on first glance everything looked good.  Now we are waiting to hear from the adolescent specialist as to what we do next.

Janey has been up and down lately.  There were a few days that featured the return of the screaming---the screaming that has no cause she can tell us or we can figure out, the screaming that is so loud it can be heard from very far away, so loud I can't imagine how she stands it without going deaf, or how I do.  There were a few afternoons where it went on for an hour, something that used to happen a lot but doesn't as much now, thankfully.  It brought back all the old familiar feelings of hopelessness and despair, and left us all on edge.  I hope it's over for now.  But there have also been a lot of days lately where Janey has been a delight---happy from morning till night, funny and upbeat.

This weekend, Janey surprised us with a few things she said.  At one point, out of the blue, she yelled over to us "I need a foot massage!"  We were both startled.  She doesn't usually use the first person like that, or use complete sentences, or be quite so direct about what she needs.  She was holding a foot up in the air, so we even knew what foot needed massaging!  That was great.  Later that day, in the car, she said "What does the green light mean?"  I think it's a question she's been asked, but she paused after asking it---she said it exactly how a question is said.

The "talker", the iPad with AAC apps on it, gets a fair amount of use.  Janey seems to enjoy it, but mostly at bedtime.  I also give it to her when she seems to be upset or confused, in hopes she'll find a way to tell us what she wants.  I have two programs on there, TouchChat and Proloquo.  (actually 3, but the third one is pretty useless)  TouchChat is what she uses at school and the one her great teacher helped us personalize, but at times, she seeks out Proloquo.  To me, Proloquo seems more daunting, but it has more content, too.  The other night I saw why she chose it, as she easily got through a few screens to find the word she wanted, "hate".  She'd been in quite a mood, and she hit "hate" over and over and over, while occasionally giving me a meaningful look I had no problem deciphering!  I actually loved that.  She was able to tell me what she was thinking, and it's pretty typical that a 13 year old girl who has spent the day with their mother might be feeling some feelings the opposite of "love".  She isn't usually using the programs for full sentences, more for finding single words, but I am letting her take the lead, and it's fantastic she seems to like having the programs to use when she wants.

All of us in the family have been struggling a little lately with our own issues.  It's been a tough spring in a lot of ways.  But Janey continues to surprise us, to keep showing us new sides.  She is becoming her own person, more and more. We've been pleased lately that she has a trait NONE of the rest of us have---neatness.  She's very organized.  What she uses goes back in the place it's supposed to be.  A little more all the time, she is truly a help around the house, doing small chores we ask her to do and picking up after herself and often after us.  I don't know where she got that neatness gene---maybe from my sister.  But one of the greatest parts of being Janey's mother as she starts her teen years is seeing who she is, seeing her very cool personality unfold more every day.

Autism and Appendicitis Pain - A Scary Combination

Almost everyone with a child with autism has noted that they express pain differently than other kids.  This might seem like an odd little quirk, but the events of the last month have shown me it's far from that.  Janey's reaction to the pain of appendicitis almost certainly contributed to her appendix rupturing, and her post-surgical pain reactions quite likely make the complications she experienced harder to treat.  If I can get one message across ever through this blog, this might be the one...DON'T ASSUME KIDS WITH AUTISM WILL SHOW PAIN IN A TYPICAL WAY!

I keep going back in my mind to the night we thought Janey was having a seizure and we called an ambulance.  Of course we don't know for sure, but Tony and I both now think that Janey's appendix burst that night.  She had a high fever, and we were taking turns checking on her all night.  When Tony checked on her in the wee hours of the morning, her arm was jerking over and over.  She was burning up with fever.  The EMTs quickly told us it wasn't a seizure when they arrived, and the ER staff felt the same way.  But it was something.  I think now it was a reaction to the terrible pain she must have felt as her appendix burst.

Neither Tony or I can remember for sure if the ER staff checked Janey's belly (I have learned "belly" is the technical terms for what we untechnically call "tummy") for pain.  Janey was not presenting like someone with appendicitis, and she wasn't being co-operative.  It took 6 people to get a throat culture on her.  The ER doctor assumed she had some kind of virus, and sent us home.  Her blood wasn't tested, but even if it had been, that might not have shed any light on things, as when it was tested the next night, her white count was normal.  The key here again was how she was showing pain.  If she had been screaming, or if she had been able to say "My tummy hurts!", I think some red flags would have gone up.

Even once Janey was admitted to the hospital, after we took her back the next night, she wasn't showing the pain you'd typically see in a child with an appendix that had already burst.  Tony and I could see she was far from herself.  The big thing we saw was that she wasn't moving.  She lay in the bed in a very, very fixed position.  I think moving was extremely painful for her, so she just didn't move.  I remember a group of doctors coming in and one of them shaking her bed a bit, and when she didn't react, saying something like "Well, she doesn't have peritonitis" (an inflammation of the wall of the abdomen) because she didn't react to the shaking.  She didn't react, I think, because she was determined not to move at all.  She had on her face what I call the stoic look.  It's a look I see a lot on her, a look where she seems to just be retreating into herself and doing everything not to let the outside world affect her.  It's not a look that betrays pain.

This is an example of how typical kids are asked to measure their pain.

Thankfully, so thankfully, the CAT scan done eventually on Janey showed her burst appendix clearly.  But her atypical reactions to pain were still an issue after the surgery.  At first, she was just given morphine around the clock, but the days went by, sometimes nurses would ask me "Do you think she's in pain?"  I knew we didn't want to give her too much morphine, that too much could slow her recovery.  But so often, I just didn't know, even myself, if she were in pain.  It was so hard to tell if she was crying because she hated the IVs, or was upset to be in the hospital in general, or if a video had scared her...it was so tricky.  We could ask her "Do you have a hurty feeling?" and she would echo it back "Do you have a hurty feeling?"  If we asked her to point to the hurty feeling, I think she often took that as a cue she was supposed to point to SOMETHING, and sometimes it was her belly but other times the pointing just seemed random.  Thinking back, I wish I'd worried less about how much morphine was getting and erred more on the side of assuming she was in pain.  But I wish even more she could express the pain in a way that was easier to understand.

I am glad Janey and all of us have only one appendix.  I will not be faced with this particular situation again.  But speaking to all the families of an autistic child still possessing an appendix, my advice would be this----If there's a chance it's appendicitis, push for imaging to be done.  Ultrasounds didn't show the problem for Janey; she needed a CAT scan for that, but that might just be her.  Make sure the medical professionals know that how much pain your child seems to be in should NOT be used to rule out appendicitis!  This would also apply, I am sure, to any other potentially serious cause of pain.  I hope none of you ever have to use this knowledge.  Best of health to all of you.

What Made Janey Autistic...#1 in a series

Whenever I run down lists of possible causes of autism, I find no shortage of reasons Janey might be autistic.  Usually, I'm left wondering how she got away with only one case of autism---you'd think she'd have some special kind of double case.  Today, I read this article, about how having the flu and a fever during pregnancy can raise the autism risk, and it brought back one horrible night very vividly for me.  If this was THE cause, it would be a dramatic, specific cause.  So I'll call this #1 in a series, and try to write about some of the other possible causes in the next few days.

That night.  It was about 5pm, and I was tired.  Not regular tired, but a tired beyond anything I'd ever felt in my life.  I was 12 weeks pregnant with Janey.  It had been a very tough start to the pregnancy.  My blood pressure shot up as soon as I got pregnant, from its normally low levels.  It was very obvious this was going to be a pregnancy like my first one, with William, and not like my second one, with Freddy.  The decision was made to put me on blood pressure medication at an appointment at about 10 and a half weeks.  My regular doctor wasn't there.  The doctor who filled in was someone I think introduced herself as some sort of student, or intern.  I wish I remember for sure.  She wasn't a regular in the office.  She prescribed Aldomet, and said "It's extremely safe for pregnancy".  I took her at her word.

After taking the Aldomet for about a week, I got tired.  Not regular tired, but a bone tired.  My face was pale, not a little pale, but people gasped when they saw it pale.  I figured---I was pregnant.  Being pregnant makes you tired.  I remember driving home that fateful night from picking up the boys at school.  I realized I was fighting off sleep, after sleeping much of the day.  When Tony got home, I lay down on my bed.  Suddenly, I realized I felt very, very sick.  It felt like I had felt that way for days, but somehow my mind had not registered that fact.  I decided I should take my temperature.  I couldn't find the thermometer.  I searched and searched, and was about to give up when I did find it.  My temp was 103.  I knew that wasn't good, even in my dazed state.  I called the doctor, and I am not sure if I even made sense.  I said I was coming in, to the evening clinic.  I think they started to ask questions, but I just repeated I was coming in, and hung up.  I called for Tony.  As he was walking over, I think I fainted.  I fell onto the bed, anyway.  He managed to get me in the car, and we went to the office.  By that point I was shaking violently.  When they took my temperature there, I remember the nurse held the thermometer up for me to look at.  It was up to 104.  They called a doctor quickly into the room.

The visit from there is a little hazy.  I know they gave me an IV right away, because I was extremely dehydrated, so much so it was very hard to get the IV started.  I know they took blood.  And I know after a bit, the doctor came back and said I was having a rare reaction to the Aldomet.  My blood tests showed my white blood cells were dangerously low.  My liver function was dangerously compromised.  I was very, very sick.

They sent me to the hospital.  Again, the time there is hazy in my mind.  I know the doctor there said she had never heard of Aldomet causing that kind of reaction.  She researched, and there it was.  It even has a name----Aldomet Fever.  They took all kind of blood, including a kind of special test where they had to scrub my arm for a long time and took what looked like a soda bottle full of blood.  And, at some point, they did an ultrasound.  There was the heartbeat, beating away.

It took me a long time to get better.  And twice more, doctors said things like "I don't think this was caused by the Aldomet"  I printed out a sheet from a Merck Manual online, listing the three things that constitute the type of rare reaction I had---high fever, low white blood cells and liver disfunction.  One of the doctors, I still remember, looked shocked and grabbed the sheet from me.

Much, much later, just a year or so ago, I learned that my aunt also had a terrible reaction to Aldomet.  I hadn't know this.  I also endured a similar reaction when given a sulfa drug a few years ago.  My records show I'm allergic to Aldomet, but no-one made the connection that people who are allergic to Aldomet often also have a sulfa drug allergy.

I remember asking my OB, after my fever had gone down, how this all would affect the baby.  She said that a sickness so severe at 12 weeks usually would have caused a miscarriage.  If it didn't, she said, the baby would probably be fine.  And I know, based on what was known at that time, she believed that.

So---did the Aldomet-provoked sickness cause Janey's autism?  I don't know.  The fever might have, based on recent research.  What it did do, though, was cause me to never again completely trust medication, or, for that matter, doctor's knowledge of medication.  I am very, very grateful that first doctor caught the Aldomet connection.  She was young, and I think she took the time to look up the possible Aldomet reactions.  The older doctors that later questioned the reaction were probably doctors that had prescribed Aldomet for many years, and hadn't seen a reaction.  That's why they call it rare.  But it happens.

I think about that night a lot.  I think I was dying.  I think if I had kept taking the medication, I would have died.  I know that sounds dramatic, but I think it's true.  And a reaction that serious---it's very possible that would have affected Janey, especially at 12 weeks, which always comes up in what I read as a crucial time in development.  But who knows?  As I've said, there are no shortage of other possibilities. If I believed in fate, I'd say that fate wanted Janey to be autistic, and took no chances in making sure she was.