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Update on dd10's eye


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Whew! After a two hour exam, we now know that she has a very rare growth on the blood vessels in her retina. It is benign and is much like a strawberry birthmark only in her eye. It is not in an area that affects her vision. They will be monitoring it. I pressed them a bit and they admitted that if it changes, they actually have no idea what to do for it but she would be passed on to even more specialized retina specialists. It has probably been there since birth but was not seen because at younger ages her eyes were not dilated and looked at this closely. It actually made the doctors quite excited because of it's rarity and it's "impressiveness". They were making comments like "way cool" and "I need a picture for my journal article!" She will have another appointment with these same specialists in 4 months and they will see if there are any changes. Most of the appointment, while long and involving a bunch of sophisticated machines with cameras and bright lights, was painless. There was one slightly painful part that did cause a few tears but my dd was a trouper.

 

We have now apologized to the cat for blaming it for toxoplasmosis.;)

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Thanks for the update, Jean!

 

I'm so relieved that it's benign, but I wish it was something that would just go away over time or something.

 

BTW, your cat has informed me that he does not accept your apology, and that a whole lot of tuna will need to be involved before he even considers it. ;)

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Yay! :D I actually have something like this going on in my eye too. But it wasn't discovered until I was an adult. My grandmother actually had something benign and harmless they were watching that was discovered later in life.

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Whew! After a two hour exam, we now know that she has a very rare growth on the blood vessels in her retina. It is benign and is much like a strawberry birthmark only in her eye. It is not in an area that affects her vision. They will be monitoring it. I pressed them a bit and they admitted that if it changes, they actually have no idea what to do for it but she would be passed on to even more specialized retina specialists. It has probably been there since birth but was not seen because at younger ages her eyes were not dilated and looked at this closely. It actually made the doctors quite excited because of it's rarity and it's "impressiveness". They were making comments like "way cool" and "I need a picture for my journal article!" She will have another appointment with these same specialists in 4 months and they will see if there are any changes. Most of the appointment, while long and involving a bunch of sophisticated machines with cameras and bright lights, was painless. There was one slightly painful part that did cause a few tears but my dd was a trouper.

 

We have now apologized to the cat for blaming it for toxoplasmosis.;)

 

That's kind of cool. Austin has some wierd stuff with his eyes but no cool talks about articles etc. He has a mole on the inside of one that gives 1 part of the white of his eye a brown spot. And he has larger than normal retinas, which we did not know about until we went to a new specialist last fall and she did the photograph thing that our old eye doctor does not do.

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Don't you hate it when you (or DC) have something doctors find "cool". Our youngest DS had his first dental x-rays this past year, and you should have seen the scurrying and extra people in the room looking at the x-rays. The doctor bounded in saying, "Are you serious? That is so cool!"

 

Turns out DS has a third top front adult tooth. It hasn't come in yet, and they weren't able to tell from the x-rays which angle it is going to come in. But they can't do anything about it until he loses the two baby teeth that are blocking it right now. Yep. Weird.

 

I'm glad that your news wasn't something awful, though. Give kitty and DD some extra love.

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Don't you hate it when you (or DC) have something doctors find "cool".

 

Actually, for dd, having them react that way took her from being scared stiff to thinking that this was pretty cool herself. I, on the other hand, found myself not so happy. They kept reassuring me that xyz probably won't happen etc. which translated really means that they don't know because there haven't been enough cases for them to know what really could happen. And while I am happy with their expertise in monitoring what is going on, I got them to admit that if something did start to change that we would have to find a much more sophisticated specialist in order to know what to do about it. Hopefully that will never be the case, but I do like to cover all the what if's.

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I'm so glad it's turned out benign for your dd and hope/pray it stays benign as the drs expect.

 

I have an eye dr story. I was 16 or 17, and at the eye dr alone. The dr leaned in closer, scrutinizing my face and eyes at close quarters, then said, "Hm."

 

He looked at me once or twice, then picked up the phone and said, "Can you come to my office? There's something I'd like you to see."

 

Next thing you know there's another dr at the door. The two drs conferred in hushed tones for a minute, and then the second dr came and looked at my eyes and my face. Then he said, "Yes. I think definitely."

 

The first dr got back on the phone. Within minutes the tiny room was FILLED with drs, all looking at my face and making unintelligible dr comments. After several minutes of this, I timidly spoke up:

 

"Can someone please tell me what's wrong with me?"

 

The room was suddenly silent. Then the original dr apologized and said, "There's nothing wrong, per se. We've just never seen this before."

 

Turns out I have Waardenburg Syndrome. Like many who have this, I have mostly the physical appearance characteristics but not the hearing loss, so it really hasn't impacted my life much. The drs had all learned about it in med school but never seen it in a live human being, and they were really excited.

 

It felt a little weird being stared at and discussed, but once I understood the reason I didn't mind.

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