[blparent] A Scare and a Question

[Pipi]

Jo Elizabeth,
I'm so glad that there are no tumors. That had to have been a very scarey 
time.  I'm a pray for the best prepare for the worst kind of person, so I 
would have been worried as well.
As far as dealing with eye patches and the like, I have had a bit of 
experience with my nephew. His eye issues were found at a routine health 
exam. He went from seeming like a perfectly normal sighted child to having 
to wear an eye patch all hours of being awake for 10 weeks. It then 
decreased to 6 hours a day. He has glasses to wear on top of that.
While he isn't my kid, I was around for the majority of the beginning which 
is the hell part.
His mom spent the money on the cool patches to start. So at least it made 
having to wear the patch more fun than sticking a funny shaped boring 
bandaid over your eye.
The times that I watched him without her around, I just made a habbit of 
checking, with my hands to see if he was still wearing patch/glasses.
He got rewards for leaving the patch on. That really helped.
He's been doing this since October and now it's 2nd nature to wear the patch 
and glasses. He actually doesn't like going without the glasses because he 
can't see.
Some of the things that I noticed is that having well lit areas will be 
important. With the patch on, in the dark, it makes things worse and my 
nephew freaked out because he couldn't see at all he said.
Hope my ramblings help some.
----- Original Message ----- 
From: "Jo Elizabeth Pinto" <jopinto at msn.com>
To: "NFBnet Blind Parents Mailing List" <blparent at nfbnet.org>
Sent: Saturday, January 14, 2012 10:41 PM
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
> _______________________________________________
> blparent mailing list
> blparent at nfbnet.org
> http://nfbnet.org/mailman/listinfo/blparent_nfbnet.org
> To unsubscribe, change your list options or get your account info for 
> blparent:
> http://nfbnet.org/mailman/options/blparent_nfbnet.org/blahblahblah0822%40gmail.com