[blparent] A Scare and a Question

Mon Jan 16 01:38:17 UTC 2012

Wow, I'm so glad Sarah's scan came back normal!  That sounds very 
frightening!  All 3 of my kids had retinoblastoma so I know those feelings 
all too well.

Each of my kids has a lazy eye.  I've had to use glasses and patching with 
all 3 of them from a very young age.  The best advice I can give is to keep 
the rule "on your face or in your case."  Keep the case where she can easily 
find it, and have her hand you the case when she takes the glasses off. 
Work on it at home before you have her wear them out so you know she is less 
likely to take them off and set them somewhere and leave them behind.  For 
patching, I recommend the patches that snap onto the lenses of the glasses 
rather than the sticky kind.  I just walk up and check their face with my 
hand every now and then to make sure the glasses are in place.  I especially 
like to do the patching if they are watching TV, because they are actually 
using their eyes constantly.  But any time she is busy doing something she 
will use her eyes for, such as putting together a puzzle, reading a book or 
drawing a picture is good.  My kids fought all the time for the sticky 
patches so the snap on patches made things so much easier.  As they get 
older, I have been able to reason with them that either they exercise their 
eye with the patch over the other one, or they'll have to see the doctor 
more and get even more eyedrops and possibly surgery.  I am always straight 
forward with them about the situation when they are able to understand.  But 
for younger kids, sticker charts work great. :)

Hope that helps some.
Take care,
Leanne

-----Original Message----- 
From: Jo Elizabeth Pinto
Sent: Sunday, January 15, 2012 1:27 AM
To: NFBnet Blind Parents Mailing List
Subject: Re: [blparent] A Scare and a Question

My first thought was meningitis, too, which prompted me to call the doctor.
I knew someone whose college age daughter died of meningitis.  She went from
fine to gone in 24 hours.  So I didn't want to take anyc hances.

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

--------------------------------------------------
From: "Robert Shelton" <rshelton1 at gmail.com>
Sent: Saturday, January 14, 2012 11:13 PM
To: "'NFBnet Blind Parents Mailing List'" <blparent at nfbnet.org>
Subject: Re: [blparent] A Scare and a Question

> You did exactly the right thing.  And now, you're in the position of 
> knowing
> what it wasn't, but not necessarily what it was.  My first thought was
> menengitis, which is not uncommon, but obviously not.  Maybe Sarah had a
> migraine.  They usually don't start until adolessence, but I think they 
> can
> occur in small children.  Like I said, good to rule out the worst and then
> go from there.
>
> -----Original Message-----
> From: Jo Elizabeth Pinto [mailto:jopinto at msn.com]
> Sent: Saturday, January 14, 2012 10:41 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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