[Calm]

Has anyone experienced one or both eyes fading in and out of vision? DD describes it as "goes white then black then normal then white then black then normal". Apparently, when it is black, she can't see anything.

It is only in her right eye. Her left eye goes blurry every five minutes or so, but not black/blind.

More info in next post. Didn't want to scare off responses with a long opening post.

 

[Calm]

We went to the ophthalmologist today to have her vision checked and she has perfect vision, in between these little constant blackouts. She could read all the letters perfectly and made no errors, but you could tell she was waiting and focusing quite hard to do it. We go back tomorrow to have her pupils dilated with drops to see her retina. Whether he finds anything or not, he will be referring her to a specialist because he hasn't heard of anything like what she described and he said it certainly isn't correctable with glasses.

I didn't know she had any of this until today. I had noticed her eyes looking red and irritated occasionally and looking a bit tired but it looked like hayfever. She also complains of fatigue a lot, esp "tired legs". For instance, today at the supermarket she wanted to sit down and opted to ride in the cart. Ordinarily I think nothing of this, but now I'm looking at everything more closely. She has a cough at night that sounds like a bark, which she didn't have before we got her a new puppy a few weeks ago. I got a toy poodle for low allergy reaction but thought it might be that anyway.

DH hopes she is lying, because the alternative is quite scary. I have asked her so many different ways, trying to see if she is for real but I'm convinced she is telling the truth. She doesn't know why she didn't tell me earlier, she's had this for weeks, and describes a weird event also as to when it started, her words:

"I was playing on the school oval and I saw a black box floating around my head. It went into my eye, it was flashing red. When it came back out, it was a blue box, flashing green. It took my eye health out with it. There were swirling colors. A bunch of ants came rushing to my feet before this happened, but I don't know what they were saying, because I'm not Doolittle. But I think they were trying to warn me. After that, my eye kept going black, and if I cover my left eye, I can only see every 2 seconds. If I don't cover my eye, it's not so bad. I can turn my right eye off, so I can read. I keep running into trees while playing tiggy, I'm going to be famous for it."

Now, yes, my daughter is wild

Most of that makes sense too because perhaps she did see a bunch of flashing colours if there was an "event" that occurred that triggered this.

 

[purplepaisleymama]

I hope that you get some answers soon. I would look into a pediatric neurologist if you don't get any answers from the opthomologist. What your dd describes sounds similar to what seizures can be like. I am not saying that is what she is experiencing but I would want to look into all possibilities.
My youngest has neuro issues and we are very happy with what we have discussed with our ped neuro. After a few appointments and a lot of honest conversation we have decided that even though our son is most likely having seizures a few times a month it is our decision to monitor him closely and not medicate.

Laura

 

[sbgrace]

I, too, suggest the pediatric neuro if the ophthalmologist finds nothing in the eyes. I'm wondering why they didn't dilate at the initial appt?
I'm concerned about the fatigue and tired legs too. Is the leg stuff only in the evening? Any other stuff besides that and the cough? How fatigued is she?

 

[4evermom]

Sometimes there are flashing lights with retina detachments. People say it's like a shade being drawn when the retina detaches, black on top. So it could be a partial detachment maybe with a big floater (which would be a big black spot floating around) from some bleeding. My brother (in his 20s) didn't even realize his was partially detached for a long time. They should be able to tell tomorrow when they dilate her eyes. Don't know why they didn't do that right off, though!

 

[4evermom]

My mom had bleeding in one eye so is effectively blind in that eye until she gets a procedure done. She's been having a real hard time with depth perception, once ladling soup onto the counter in front of a jar, lol. So it makes sense your dd would run into trees if she can't see out of one eye!

Hope they have some answers for you tomorrow!

 

[Amylcd]

"goes white then black then normal then white then black then normal".

Could it have something to do with her sugar levels? When I stand, many times everything goes light brown / white and then slowly back to normal. DH says when it happens to him, it is black (instead of the brown i see).

Flashing colors could also be a sign of a migraine (you can have a migraine without pain, that only affects your eyesight)

 

[Calm]

Hmm, I'm not sure why he didn't dilate yesterday. Maybe he had another appointment. She has no headaches, but it is true that migraines can happen without the headaches. Detached retina is a possibility, I have a webpage for her to look at when she wakes up which shows a gif pic of the black moving downward. I'll ask her if that is what it is like.

Quote:

I'm concerned about the fatigue and tired legs too. Is the leg stuff only in the evening? Any other stuff besides that and the cough? How fatigued is she?

She has complained of tired legs for as long as I can remember. I was initially concerned, as she had other symptoms at the time (when she was 2 or 3) and she ended up in tests at the hospital because one day she suddenly couldn't walk. She had a high white blood count but nothing else. While we were there, her legs started to work a little again.

This sounds terrible but it has always sounded like an excuse to me, or a trick. For instance, she rarely drinks anything, yet when we go out, suddenly she starts shrieking that she is thirsty and needs a drink. I figure she wants a bought one (and in my desperate hopes she'll drink) so I buy her one and she has a few sips and carries it home and promptly forgets it. We walk around the supermarket and suddenly she just drops or says she can't walk anymore, her legs are tired and I figure she is just tired of the shopping thing. I err on the side of caution though, and offer her a place to sit down and wait for me.

Yet at the same time, she won't run. She has never really "run". And one time, I was actually in tears because the school put on the carnival and she wanted to go in the running race. I supported her endeavour. They started racing and she was immediately last, but kept running, all by herself, this slow painful looking run that seemed to go on forever (just thinking about it my eyes are watering.... sap I am), and we're all on the sidelines cheering her on and I'm in tears wishing I could reef her out of there and run far far away.

But she was so proud; she said "I came 10th! I got an award!"

Anyway, I just have always assumed she isn't a physical person, more mental (very smart, is my girl). And it being going for so many years only compounded my assumption. And it still may be so, it may be unrelated to anything and just her.

 

[4evermom]

Just the tired stuff while shopping wouldn't worry me. Ds is like that with his feet. His feet hurt whenever we shop or go for a walk. I try to get the most comfortable shoes, I add arch supports, etc and he is otherwise very active.

But the other stuff you mention, not ever running, would worry me a bit. I'd be wondering about her heart health among other things.

 

[4evermom]

When I was a kid, the neighbor mother next door died of congestive heart failure. Her doctors thought it was something she developed as an adult. But she told my mom even when she was a kid, her sister could swim across the pool easily but she had a hard time and breathed heavily to do it. So my mom (also a MD) suspected she always had a heart problem that just went undiagnosed in childhood.

Anyway, I don't mean to be alarming. I do hope there is nothing serious wrong.

 

[sbgrace]

I'd be concerned by that. There are lots of things in my mind. Did she ever have any metabolic labs drawn--particularly when she was hospitalized? Does she say her legs hurt? Do other muscles hurt? Has she ever had a heart echo? Any GI or other issues?

 

[Calm]

We're going to get as many non-invasives as we can we've decided. Just get an all round check up. I hope we don't have to go into invasive territory...

 

[Calm]

cross post (left window open). No other labs, unfortunately. was born with heart murmur that cleared up by 6 weeks, I think it was. Just two seconds ago I asked her "do your legs just get tired, or do they hurt as well?' and she said, "just tired" I asked, "anything else get tired like that or just your legs?" and she said, "sometimes my brain. (touched her head with a wincing gesture) my brain gets so tired I have to stop it thinking."

Learn something new every minute.

 

[4evermom]

Quote:

Originally Posted by Amylcd When I stand, many times everything goes light brown / white and then slowly back to normal. DH says when it happens to him, it is black (instead of the brown i see).

That can happen from not drinking enough, too. Postural hypotension when standing up, lower blood volume from not drinking enough making it worse. My mom and I get that.

 

[Calm]

did you mean postural hypotension (low blood pressure)? I have hypotension all the time, it is helped by drinking more.

 

[4evermom]

Doh! Yes, I do.

 

[momofmine]

: Let us know how it goes, Calm.

 

[Calm]

So her retina is amazing and perfect. I have photos of it. Wild. He was going to refer us to a retina specialist but I didn't want her to go through this again and then again (esp when her retina is perfect). So he said I had to go to a doctor to get a referral to a neurologist. So that's our next move. Maybe this afternoon.

She is currently walking around with a black pillowcase over her head and my sunglasses on over the top. It's like we're playing guantanamo bay. Only with sunglasses. Oy.

At no point did the flashes and blindings stop.

 

[tylerdylan]

Definitely see the Neurologist. DS1 has a very slow growing brainstem tumour and many of your DD's symptoms occur with tumours in this location.
Good luck finding your answers and I hope there is simple and unthreatening answer to it all.

 

[Calm]

What symptoms did your DS have, if you don't mind me asking? Tumor has crossed my mind. I have tried googling her issue but I don't even know how to do that. I can't find anything, not one thing, like what she's dealing with. I have even tried googling "flashes of black and lights and colors in vision" but of course, stuff like that isn't getting any good search results.

Last night DH took her to the doc and she has an EEG referral and a referral to a pediatrician. There is one pediatric neurologist in my state, it sounds like (I'm in Australia) and he only takes referrals from pediatricians. I'm hoping to get to both our referrals today. I want to get this over with fast.