[blparent] A Scare and a Question

Tue Jan 17 21:12:05 UTC 2012

Jo Elizabeth, my niece had that and they had to tape the patch to her eye.
My brother told her she was the best pirate in town and she wore her patch
with pride.  She wa also 3 at the time.

-----Original Message-----
From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
Behalf Of Jo Elizabeth Pinto
Sent: Saturday, January 14, 2012 9:41 PM
To: NFBnet Blind Parents Mailing List
Subject: [blparent] A Scare and a Question

Hi, everybody.  We had a big scare yesterday with Sarah.  She was playing
and feeling fine about two-thirty in the afternoon, and then all in a matter
of thirty seconds, she was crying and saying that her head hurt.  She kept
squeezing the back of her head, which I thought was an odd place for a
headache.  She'd complained of a headache in that spot a couple of times
over the past few weeks, but I hadn't really paid much attention because
she'd mention the pain and then be off to something else like nothing was
wrong.  I figured she'd maybe hit her head on the table or something, but
there was no lump or cut, so I wasn't too concerned.  I even thought maybe
she was complaining of headaches because I get migraines myself, and she was
imitating what she'd heard me say.  But yesterday, she curled up in the
chair and wouldn't move.  I gave her some Tylenol and a bite to eat, but
something told me that wasn't enough.  So I called her doctor, who said to
bring her in right away.

By the time we saw the doctor, Sarah was having nausea, and vomiting a
little.  The doctor checked her over and found that her eyes weren't
tracking together.  She could follow a laser light or a finger with one eye,
but not with both at the same time if she didn't move her head.  So the
doctor sent us to the nearest emergency room at a children's hospital for a
CAT scan.  She said sometimes brain tumors could present themselves with
symptoms such as intense headaches, vomiting, and eye tracking problems.
You can bet my heart was in my throat.

The results of the CAT scan were normal, thank God.  No tumors.  It still
takes my breath away when I think of what we avoided.  I just finished
reading three bedtime stories to Sarah, and I felt so lucky to be doing it,
knowing there was no growth lurking inside her brain stem.  Her dad said I
got worried over nothing, and he was all for waiting till we had something
to worry about.  But I've seen the one in a million odds happen--my ex
husband was diagnosed with a disease that only about three hundred people in
the United States have at any given time.  He was thirty years old when he
was diagnosed, and all but a half a dozen of the three hundred people with
the disease were at least fifty.  So I know a little about long odds and how
they can bite you in the butt.

Anyway, then I wanted to know what could cause such intense headaches and
nausea in a three-year-old, if it wasn't a brain tumor.  The doctors think
it's because Sarah has strabismus, better known as a lazy eye.  Her left eye
doesn't follow the other one very well, which may be causing Sarah to tilt
her head for better vision.  The headaches could be coming because her eyes
are tired or because the muscles in her neck get overexerted from the
tilting.  I have to make an appointment with a pediatric ophthalmologist
this next week, and treat headaches with Motrin as necessary.  All that's
better than a brain tumor, for sure.

I had an appointment with a pediatric ophthalmologist a few months ago, and
Sarah's eyes happened to be tracking just fine that day, so the doctor
didn't take me very seriously.  I'm hoping the fact that her primary doctor
has seen the problem might make it easier to get answers from the
ophthalmologist.  I looked on the Internet, and it seems the treatment
options for strabismus are patches on the good eye to make the lazy eye do
its share of the work, glasses and prism lenses, or surgery to change the
length of the eye muscles.  It all depends on what the doctor says, of
course, but I'm wondering if any of you have had experience trying to get
young children to wear glasses or eye patches, or did you wear them yourself
as a child?  I'll need to find a way to get Sarah's cooperation because I
won't see if she's wearing the glasses or patches at any given moment, if
I'm by myself.

Thanks for sticking with me through this long story.  Mostly I wrote it down
because I want everyone to hug their children, and give them a bunch of
kisses tonight, and remember how lucky we all are.  Maybe I'm neurotic and a
worrier, but I was scared to death, scared like I've never been before in my
life, last night, sitting in that little hospital room waiting for the
results of the CAT scan, and of course I had to keep most of it to myself
because Sarah was going through enough and her dad was like, would you just
not worry till there's something to worry about?  I felt like I had plenty
to worry about.  Anyway, life is fragile, and every day you have with your
kids, every bedtime story, every hug, is a treasure.

Jo Elizabeth

"How far you go in life depends on you being tender with the young,
compassionate with the aged, sympathetic with the striving, and tolerant of
the weak and the strong.  Because someday in life you will have been all of
these."--George Washington Carver, 1864-1943, American scientist
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