DD has unequal pupils - don't know what to do - Mothering Forums
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#1 of 35 Old 09-14-2008, 12:11 AM - Thread Starter
 
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This has been a worry of mine since I first noticed it when she was about 5 weeks old. She turns 6 months tomorrow. She has seen her ped a couple times about it, she's been to a pediatric ophthalmologist for testing and measurements, and she has seen a neurologist. All have basically told me they don't think it is Horner's Syndrome (which would indicate an MRI should be done) but her one test could be interpreted by some doctors as equivocal (it was a cocaine drop test) but her doctor considered it 'negative'. Anyway, we just saw him again the other day and he still think she looks fine, "just" unequal pupils, which he claims occur in 4% of the population even to the degree hers are (which I'm not sure that's true) and considers it 'physiologic anisocoria' but said if I'm very worried, we could just do an MRI. But I don't want to put her through that if it's not necessary, but sometimes when I look at her eyes and think what if months down the road we find out she does have something going on (neuroblastoma is the fear in my mind) and here, all these months, I saw this glaring sign every time I looked at her and didn't do the stupid MRI. But then again, what if she has complications from the sedation?

I'm so torn. Part of me thinks/hopes that since it's almost 5 months since I first noticed it and she still seems healthy, that hopefully nothing is going on.

I saw a study that had over 600 test subjects in it (babies) and there were no major adverse events from sedation for MRI. Now, if we took 600 babies who had the degree of anisocoria my DD has, I'm guessing there would be more bad stuff going on than 0 in 600, you know?

I just don't know what to do! Should I just do an MRI? Here are two pictures from tonight - first is without flash and second is a 'red eye' flash picture.

http://img.photobucket.com/albums/v7...y/DSCF3724.jpg

http://img.photobucket.com/albums/v7...y/DSCF3725.jpg
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#2 of 35 Old 09-14-2008, 12:26 AM
 
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I don't have a definitive answer, but I wanted to let you know my daughter has the exact same thing. We also went to the ped and the opthamologist to check for Horner's Syndrome. We, too, had the cocaine eyedrops and were told it was "just" unequal pupils and whatever percentage of the population had it. She is now almost 3 and is still totally healthy. It does sometime occur to me that it could be something greater, but my gut tells me she is fine.
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#3 of 35 Old 09-14-2008, 12:35 AM - Thread Starter
 
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I don't have a definitive answer, but I wanted to let you know my daughter has the exact same thing. We also went to the ped and the opthamologist to check for Horner's Syndrome. We, too, had the cocaine eyedrops and were told it was "just" unequal pupils and whatever percentage of the population had it. She is now almost 3 and is still totally healthy. It does sometime occur to me that it could be something greater, but my gut tells me she is fine.
This makes me feel so much better. Do you remember if her eyes were perfectly even after the drops or whether there was still some unevenness? Were her pupils as different in size as my DD?

Sometimes it seems like they are closer in size, and when it's like that it gives me comfort. It seems often later at night is when they get their worst - I don't know if being more tired can somehow cause them to worsen.
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#4 of 35 Old 09-14-2008, 12:39 AM
 
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No advice, but I did want to let you know that your daughter is as cute as a button. What a sweetie!
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#5 of 35 Old 09-14-2008, 12:43 AM
 
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Did the Pediatric Opthalmologist mention anything called PHPV or PVS? Those two things will cause a smaller pupil like that because the stalk does not detach properly as the eye forms in utero.

If it is just unequal pupils, you should be sure you always let school/caregivers know about it because it is a sign of concussion.
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#6 of 35 Old 09-14-2008, 12:59 AM
 
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This makes me feel so much better. Do you remember if her eyes were perfectly even after the drops or whether there was still some unevenness? Were her pupils as different in size as my DD?

Sometimes it seems like they are closer in size, and when it's like that it gives me comfort. It seems often later at night is when they get their worst - I don't know if being more tired can somehow cause them to worsen.
I don't remember what her eyes looked like after the drops. She was about 2 or 3 months old then, so it was awhile ago. Her eyes do look as different as your daughter's, and they also sometimes appear closer in size. I asked the opthamologist about that, and he said it just had to so with how much the pupils were dilated, so it makes sense if they look worse at night since the pupil would be dilated more and look more different.
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#7 of 35 Old 09-14-2008, 09:13 AM
 
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My son had this...and it fluctuated. Sometimes it was more obvious than others. I attributed it to his hard delivery...he was posterior, large head and stuck in there for a while. So his head was assymetrical for a while and his eyes were slightly uneven...very, very slightly. He's 3 1/2 now and all is well. He's been checked out by our ND and is fine.
I know we could have different situations, but just know that it can be one of those anomalies. If her development is fine and you have no other reasons to be suspicious, I would try to relax and nourish her little body so it can work the kinks out on its own. She's beautiful, by the way!
HTH.
jiva

: : :
ds1 3/05 ds2 5/07 dd 6/09
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#8 of 35 Old 09-14-2008, 10:03 AM - Thread Starter
 
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Thanks so much for the replies (and the compliments, too)

I have EBF her and won't give solids until I absolutely have to and no vaxes, either, because I want her body to be as healthy as possible just in case anything is going on. She was a c-section due to vasa previa and placenta previa and at birth she was found to have a true knot in her cord - I'm not sure if true knots can sometimes start in utero with a cord around the neck, but I wonder if it's possible that it was around her neck for a while and that damaged something - or some other thing since she was starting to suffer from IUGR before the c-section.

I'm definitely asking for the 24-hour urine test that is 90% reliable to screen for neuroblastoma and then go from there. I will also see what her doctors think on Tuesday about the MRI. I could have just done this MRI right away but I went with the doctors when they said they thought it was "just uneven pupils, not Horner's".
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#9 of 35 Old 09-14-2008, 02:59 PM
 
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My honest advice, from a mom with regrets on this issue...get the MRI.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#10 of 35 Old 09-14-2008, 10:44 PM
 
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Originally Posted by starlein26 View Post
My honest advice, from a mom with regrets on this issue...get the MRI.
What was the outcome if you don't mind my asking?
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#11 of 35 Old 09-14-2008, 10:45 PM
 
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#12 of 35 Old 09-14-2008, 10:47 PM
 
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If it helps, David Bowie, the performer, has unequal pupils and two different colored eyes.

His pupils are unequal because his eye was injured in a fight when he was fourteen. He is missing some sight in the left eye because of it.
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#13 of 35 Old 09-14-2008, 10:48 PM
 
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Well, my son had a brain tumor that we missed for over a year. We didn't listen to our fears/concerns on the issue, instead we listened to a pediatrician that told us that he wasn't concerned about our son. An MRI would have gotten him the help he needed much sooner, obviously.

I just feel that as a parent...if you're truly concerned about something...it's always good to do those things that are necessary to put your mind at ease. Even if those things are kind of scary too, like an MRI, and even if a "doctor" tells you he/she isn't worried or has another explanation (that wasn't concluded after thorough testing of some sort).

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#14 of 35 Old 09-15-2008, 02:02 AM
 
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She is so beautiful! I watched both of you IVF videos on youtube(and cried- a lot). In the second one at 3 min. and 21 seconds is a pic where her pupils seem to be even, maybe it's just the pic and maybe it's just me. I'm guessing she is about 3 months there. Do you think it is getting worst (more discrepancy or for longer periods of time)?

I don't like the idea of an MRI either but I think I would get one. That's easier for me to say thought because my aunt is the one who does the sedation in the radiation department of our hospital. I did call and ask her about bad responses to the meds. In the 18 years that she has been there she hasn't had one bad reaction in kids under the age of one. The worst thing she has had happen is in older kids. They often give them benedryl to help them settle down and in some kids it has the opposite affect and makes them hyper.

I hope whatever you decide you are able to find peace and that you're daughter lives a long and healthy life.
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#15 of 35 Old 09-15-2008, 08:30 AM - Thread Starter
 
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Kara, thank you for watching my videos.

Actually, they haven't gotten worse. They seem to be the worst in the evening, but mainly it's just indoor light - dim light would be worst but sometimes it's not even all that dim, just indoor light. But even outside in bright light I usually see a slight (very slight) difference. A lot of pictures taken in bright light you can't see much difference. This is why I have to actually take pictures of it to doctors so they don't just totally blow me off. I took this picture back the evening before her first doctor appt and at the doctor in the bright exam room light, the doctor never would have even noticed her eyes were uneven, but in this picture, they are VERY uneven: http://img.photobucket.com/albums/v7...y/joelyeye.jpg - that is the picture every one of the doctors she has seen has also seen.

I did email the ped opthalmologist we've been seeing and told him I just wanted the MRI. I am scared to do it - I wish now I'd just done it before but hopefully they won't find anything.
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#16 of 35 Old 09-15-2008, 10:31 AM - Thread Starter
 
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Well, my son had a brain tumor that we missed for over a year. We didn't listen to our fears/concerns on the issue, instead we listened to a pediatrician that told us that he wasn't concerned about our son. An MRI would have gotten him the help he needed much sooner, obviously.

I just feel that as a parent...if you're truly concerned about something...it's always good to do those things that are necessary to put your mind at ease. Even if those things are kind of scary too, like an MRI, and even if a "doctor" tells you he/she isn't worried or has another explanation (that wasn't concluded after thorough testing of some sort).
Starlein, I'm so sorry about your son. I hope very much that they were able to cure him and give him a clean bill of health

I did talk to the doctor this morning and I'm waiting for him to do some checking - I Hope they can do this soon so I can hopefully put this fear to rest.
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#17 of 35 Old 09-15-2008, 11:15 AM
 
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I Hope they can do this soon so I can hopefully put this fear to rest.
Best wishes to you and your sweetie. I'm glad that you're doing something that although scary *will* ultimately put your mind at ease if it shows nothing.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#18 of 35 Old 10-16-2008, 04:23 PM - Thread Starter
 
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I wanted to update. DD had her urine tests redone (for catecholamines) and she just had an MRI of her head, eyes and neck on Friday and they were all normal. The only thing left to check is a chest x-ray, which the doctors don't think she needs. I'm not going to push it now but may do it sometime in the next few months.
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#19 of 35 Old 10-16-2008, 05:02 PM
 
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Yay! : That must feel super reassuring hunh?! I'm so glad that all went well and your sweetie just has unequal pupils!

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#20 of 35 Old 01-19-2009, 07:11 PM
 
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I just noticed my DS has uneven pupils as well, so I am taking him to the doctor. I had a really fast delivery, and his hand was on him face when he came out, so maybe that is the cause of it? On the eyelid of the pupil that doesn't dilate, there is a small broken blood vessel that was there at birth.

Thank you for the idea of taking pictures to show the doctor! It doesn't happen all the time, so it's a very good idea to capture it to show her.

Carly BFing Mom to DS and loving wife to DH
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#21 of 35 Old 01-19-2009, 07:56 PM
 
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My youngest DD has the same issue. Her left pupil is larger than the right, especially when the lights are a bit dim. We took her to the Opt. Doc. and he measured the difference to be less than 1mm. We thought for sure he was going to dialate her eyes but he didn't. He said she looked fine and there is nothing to worry about. I'm glad she didn't have to have any additional tests but after 5 minutes with the doctor I just wish he would have spent a little more time.

Now the baby was born very fast, 2 hours of active labor and she had been floating just before real labor started. The doctor had to cut the cord to allow her body to be born as it was wrapped so tight around her kneck. She broke alot of blood vessles in that eye (it took almost 1 month to completely heal). So the doctor did say this difference is mostlikely the result of the trauma that eye suffered.

I'm so glad to hear your tests so far have all come back negative. Just wanted to let you know your not alone.
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#22 of 35 Old 01-19-2009, 08:07 PM
 
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I have uneven pupils (although not to the same degree as your daughter) and the only thing doctors have ever said was "Cool". And then they tell me to make sure people know about it so if I ever hit my head they know that the eye discrepancy was pre-existing.

I haven't had any ill effects from it as far as I know and my eyesight is fairly decent for someone of my age.

Martha
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#23 of 35 Old 01-19-2009, 08:25 PM
 
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DH has this too, thay are very uneven. It's not a big deal. She might be nearsighted in the smaller pupil eye.
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#24 of 35 Old 05-20-2013, 11:18 AM
 
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Hiya, while searching google I found you thread. My son is 11 weeks old and has unequal pupils. Pretty obvious as well. I was just wondering what happened with you and your lil girl. Did they give you a reason as to why? Has anything changed with them as she has gettin older?

I'm worried sick, no one understands why I'm worrying tho. Hope you get back to me.

Sarah. X
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#25 of 35 Old 05-20-2013, 11:31 AM
 
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I know I am not the original poster, but I responded when she first posted. My daughter had the same thing. She is now 7.5 years old, and you don't even see the discrepancy any more. If I were you, I would take your son to a pediatric opthamologist to make sure they think it's just physiological.

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#26 of 35 Old 05-20-2013, 12:44 PM
 
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Hiya! How obvious was your daughters? We have been to eye doctor and he said he doesn't know why it is the way it is... But he done a eye exam and said everything looks good. I back on the 4th of June to see an ophthalmologist so hoping for some answers.

So has she grew out of it do u think? I just worried sick it could be more than just his pupils.
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#27 of 35 Old 05-20-2013, 01:49 PM - Thread Starter
 
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Hi Sarah,

My daughter is 5 now - how time flies!  They did a cocaine test on her eyes and it really looked 'unequivocol' for Horner's Syndrome (her doctor called it negative but I still saw a difference in the size).  They also did an MRI and urine catecholamine testing - her eye doctor would have just blown the whole thing off but I was concerned about scary things I'd read online and didn't want to take any chances.  It all ended up that they couldn't find anything wrong.  Her eyes are still unequal, though I think a little less noticeable than in that photograph I posted of my daughter when she was a baby.  Thankfully it was a lot of worrying for nothing. 

 

I had found a doctor online (can't remember anymore  how) - his name was Dr. Altman.  He was SO helpful!  He had me call him and I remember being shocked he took time out to talk with me.  We exchanged a few emails, as well.  I'll copy/paste them here in case they are helpful.

___________________________________________________________________

Dr. Altman,
 
Thank you so much again for talking with me!  It was very helpful. 
 
Can I just clarify, you said doctors hesitate to do cocaine but the other drop has known adverse reaction - so for your patients (and I know you haven't seen Joely, but in general) do you use cocaine if you noticed a possible Horner's or that other drop?  Or would you just do an MRI and not do either?
 
Thank you!
___________________________________________________________________
Cocaine is a pain
cuz it's hard to obtain
difficult to administer
and stings like crazy

If I think it's a Horner's...I don't do any drop tests

I just go for the urine and  MRI/CT scans

If I'm not sure, because - sometimes the exam and pupil/lid findings are equivocal

The I will try to figure it out with a drop test.

and If I am going to use a drop...in a baby...
I will use Cocaine, as very few side effects
and that Iopidine drop test, scares me for little ones...( great in adults though)
With the reported few cases of severe drowsiness.



Michael Altman MD
Director Pediatric Ophthalomology
Director Neuroophthalmology
Krieger Eye Institute
Sinai Hospital of Baltimore
MOB 6th floor
2411 West Belvedere
Baltimore , MD 21215
W (410) 601-9084
F   (410) 601-6606
______________________________________________________________________________
Hi Dr. Altman,
 
I wanted to update you on my daughter's anisocoria.  We did a spot urine test that showed normal levels of whatever it was the pediatrician checked (he said they were chemicals relating to those acids they check to rule out neuroblastoma but that since it was a spot test and not a 24-hour one, it wasn't testing the actual HMA/VMA levels ~?? something like that he said~).  Today we did a cocaine test at the ophthalmologist's office and her eyes definitely both dilated.  The anisocoria was less obvious after the drops (going from about 5mm and 7mm to 7-7.5mm and 8-8.5mm is what the doctor estimated) and he felt that with no other signs of Horner's that we should just follow-up in 2 months and do no MRI or anything like that.  He feels it's physiologic anisocoria.
 
Are the eyes supposed to be equal after cocaine or if they are still unequal but both dilated from their original size, is that enough to say it's not Horner's and nothing further needs to be done?  On the info her doctor showed me it said in Horners no dilation occurs, but I also read online that anisocoria greater than .8 mm post-cocaine and it is Horner's.
 
I wish we had taken pictures before and after .... I thought of that after I was there that I should have brought my camera.
 
Thanks so much,
_____________________________________________________________________________
Wow Ms Mack...
Thanx sooo much for the follow up !!!

First off, sorry for getting back to you so late
I just got back into town and am checking E-mails this morning.

Now some praise for you .
You have got to be the most informed mom I have met, or almost met...
In a good way, as many get 'online' and find spurious ,only somewhat accurate information
and begin concluding all kinds of silliness...
You on the other hand found 'THE' study on Cocaine and Horner's
Out of Iowa...and Randy Kardon's group....which is the gold standard
That any remaining anisocoria (difference in the size of the pupils)  after Cocaine (0.8mm ,  as you stated)
remains suspicious
BUT...yes I said BUT...
in your baby's history/ story, clinically think I'm gonna have to now agree with your Peds Ophthalmologist
To say -
1.There are no other signs of Horner's...
2.The Urine tests were negative for Horner's...
and
3. The right pupil did dilate quite well...

...It is so so hard to truly /accurately measure pupil size in a baby
despite that, with the difference in pupil size so much less, This remains evidence against Horner's...
Now a question....Did he measure, or attempt to measure the post Cocaine pupil size in  bright light,
or in dim light...when he gave you those numbers...? Both are good, but in the dim/dark light - may be better...
Again though - its so hard to get a great measurement in a baby

With the gestalt finding though that the pupils were relatively equal now, after Cocaine,
along with the other points mentioned above...
I think it is  evidence against Horner's.

Now Ms Mack...we are not G-d nor are we prophets.
The only way to know for sure , is to image
(and truthfully, imaging is not perfect either !!!)
however, given the small risk of putting the baby thru that (general anesthesia...etc...)
and the very very small/unlikely chance of finding anything at all
I would agree to follow along carefully.

Wishing you and your family only the best of health and success

Michael



Michael Altman MD
Director Pediatric Ophthalomology
Director Neuroophthalmology
Krieger Eye Institute
Sinai Hospital of Baltimore
MOB 6th floor
2411 West Belvedere
Baltimore , MD 21215
W (410) 601-9084
F   (410) 601-6606
________________________________________________________________________
Dear Dr. Altman,
 
Thank you again so much for your time - and I'm flattered, too, by your praise ;)  I sometimes feel like doctors think I'm crazy, so it's nice to hear otherwise.
 
I feel better after receiving your opinion.  I still may end up going to another doctor here to have him look at her if I start feeling really nervous about it.  My only other question is wondering if I should ask for the "real" urine test (24-hour) - or do you think the spot test was enough, being that it was negative?  I
 
I was hoping the cocaine would allow us to go on our merry way, stop worrying, and while it did make me feel better, it didn't erase the worry just due to the less-than-conclusive results.
 
Thanks again ~
_____________________________________________________________________________
hmm
yes, less than 100% conclusive results
But very positive...I mean good results for the baby....
and thats often the way medicine is...and life as well...
Ya got a really good idea, and youre confidant
however there always can be a wrench
On the other hand, it seems to me that all arrows point here in the right direction
You have to do what you feel is right
and what will help you sleep  well...cuz your mom...
and peace of mind is very important.
You aren't wrong to go further
but my gut is with their's on this one.
Keep me posted
Always good to hear from you
M
________________________________________________________________________________
________________________________________________________________________________
 
(Gotta love gmail and the archiving of old emails!!)
 
Hope that helps and hope you get your answers!  (((( Hugs ))))
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#28 of 35 Old 05-20-2013, 02:07 PM
 
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Hiya! How obvious was your daughters? We have been to eye doctor and he said he doesn't know why it is the way it is... But he done a eye exam and said everything looks good. I back on the 4th of June to see an ophthalmologist so hoping for some answers.

So has she grew out of it do u think? I just worried sick it could be more than just his pupils.

 



My daughter's were about the same as the original poster's daughters are that she put a link to in the first post. I, too, worried sick about her pupils, and sometimes, I think to look again at her eyes, but they seriously look the same to me now. The only thing different is that she has blue eyes, and on one, she has a slight bit of brown.

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#29 of 35 Old 05-21-2013, 09:27 AM
 
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Thank you so much ladies! I'm over in the uk, they don't rush for nothing here. I've got a feelin I'm just goin to get brushed off when I go to see him on the 4th. Java, I've not got a clue what questions or anything I should be askin, could u tell me what sort of things you asked the eye doc when you got there?... Seems you know a lot about it. Would a normal eye drop have showed up horners or does it have to be a special one?

Khanni. What's is they say it was with your daughter when she got checked out? We're they expecting her eyes to even out? So pleased I found this place... I've a picture of my lil boy. I don't know how to upload. Picture isn't very good either. Darn iPads don't have a flash. X
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#30 of 35 Old 05-21-2013, 09:28 AM
 
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