Autism, Communication and Being Sick

Janey is sick.

In her early years, in fact, until the whole appendix ordeal, Janey was rarely sick.  But lately, that seems to have changed.  She missed a few days of school in December due to a bad cold, and now, she has something else, maybe the flu.  She had a little cough last week, not enough to have to stay home, but on Saturday, she seemed worse.  Around 3, she got rapidly sicker. She was shaking  a huge amount and felt extremely warm.  We couldn't find the thermometer that works for her (she won't hold one in her mouth), but she was sick enough we took her to the urgent care clinic.  They ALSO didn't have a forehead thermometer, but it was obvious she was burning up.  Her pulse was 250, and she was very lethargic.  She wouldn't open her mouth, but her ears were fine.  The doctor decided to put her on antibiotics, with the thought she probably had strep.

Our thermometer.  Accurate?  Not sure...

We got home, and I found the forehead thermometer.  And took Janey's temperature.  And was shocked by what I now know must have been a faulty reading.  It was 107.  I am told that if she was really that hot, she'd have been in a coma or something.  I took it again a minute later, and it was 106.  I took mine, and Tony's, and Freddy's, all of which read normal.  I took Janey's a few more times---over and over, 106.  I called the nurse line.  They told me to take off Janey's clothes and give her a tepid shower, and call them back in half an hour.  We had given Janey Tylenol just before I took her temp.  I did as instructed.  In half an hour, Janey's temp was 104.  The nurse told me when I called back to take her to the ER.

I hate emergency rooms.  No matter how good a hospital is, the ER seems like the weak link.  The ER was the place that didn't even touch Janey's belly, that we can remember, when it turned out that her appendix has probably already burst.  But I was scared.  I'd never seen a fever that high.  So Tony drove us to Mass General.

I don't like ERs any better now.  By the time we got there, for whatever reason, Janey's temperature was normal.  She was being herself, screaming and then being cheery and lively.  I tried to tell them about her fever just a bit before, but I honestly think they thought I was making it up.  I felt like screaming "Yeah, I came here just for fun.  No better time than an ER on a Saturday night with an autistic kid.  Good times, good times"  They gave Janey a very minor exam and sent us home.

Yesterday, every time the Tylenol or Motrin ran out, Janey's temp was back up to 104 or so.  She has a dry cough and she slept most all day.  Today I will call for an appointment at her regular doctor's office.  I hope they listen to me.  It's very possible she has something viral, a flu, that will just run its course.  The ER doctor did manage to look in her throat and see it was fine, so it's not strep.  But the point is, I don't know and she can't tell me.

I used to be a lot more laid back about illnesses.  But when you have a child with a burst appendix, in the hospital for almost a month, a child that presents hugely atypically, even with her blood tests---you get scared.  You doubt yourself.  Janey, along with many kids with autism, doesn't react to illness in typical ways.  I do wonder if this is even on a physical level as well as emotionally.  She was almst never sick for so many years, even when other kids in her class got sick.  I think her body overreacted to any virus or bacteria, and kept any symptoms from showing.  Even now, I think when she does get sick, it takes a pretty strong strain of whatever to lay her low.  And she can't accurately tell me what hurts, or if she has odd feelings.  For all I know, she always hurts or has odd feelings.  I certainly hope not, but I don't know.

So, we fumble on.  I hope Janey's better today.  Right now, she is peppy, and after taking Motrim, fever-free.  But who knows?  We will keep on trying to make sure she gets proper health care, and we will try to educate medical professionals on the reality of life with low-functioning autism.  It's all we can do.