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Toddlers: 24 Months+
sourpatchkids
member
Anyone have any experience with aniscoria/ptosis/ophthalmologists?
sourpatchkids
member
DS was born with unequal pupils, known as aniscoria. I didn't notice until his 1 year birthday party - I noticed in a picture later that day. I called the pedi right away, who said it was completely fine if he didn't have a recent injury - I didn't need to bring him in. I scheduled an appt with a pediatric Ophthalmologist here in town a few months out (Oct 2011) and when the appt came he checked out fine and I was told to look back at pictures and see if he had it for a while. So that is when I discovered he'd had it since birth. My fears were gone, really.
Well in March of last year (12) I noticed that sometimes in pictures one eye (the eye with the normally smaller pupil) looked tired or something. I took him in to his pedi a few months later and was told it could be x,y,z but that he didn't have any of the symptoms of those things so he was fine and if I took him to an opthalmologist he'd have unnecessary testing done. She diagnosed it as a slight ptosis and sent me on my way.
A few months later I noticed an enlarged lymph node under his jaw line. I was pretty much over his pedi at that point because of the way they handled some things with us as well as with my niece, so I switched to a very recommended pediatrician's office and they saw him (this past Oct - 12) for the eye stuff and the lymph node. They said the lymph node was probably a reactive lymph node that is staying swollen between colds. By this time, I could kind of see the eye ptosis just by looking at him (not just in pics anymore) and they referred me to a different pediatric Ophthalmologist than we saw the first time (there are only two in our town and the first one misdiagnosed my SIL's little brother so I was a little uneasy going to him - they other one diagnosed him correctly). The new Ophthalmologist wasn't taking new patients even with referral so they sent me back to the first one.
I went to that appt at the end of Oct. He said he wasn't concerned with the ptosis and to just take lots of pictures over the next few months and he wants me back in Feb to look at what his pupils are doing. He said he thinks it's just him. He said if the left one (the usual smaller one) is *ever* bigger than the right (which it is) than it is completely fine.
His lymph node was still swollen so at the end of Dec they did a full cbc (blood panel) which came back normal. It is still swollen now and varies in size - sometimes it's huge, sometimes it's smaller.
Idk. It just worries me that the ptosis appeared out of no where. I can't track it before Feb of last year when I look back at pics and that now I can just look at him and see it. It's like that whole eye is a little smaller.
Brady (7.15.10) and Nolan (5.11.13)
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Re: Anyone have any experience with aniscoria/ptosis/ophthalmologists?
Can you get another opinion? I know you said there are 2 opthamologist in town, but can you go outside of town (don't know where you live).
A girl I knew in high school had an enlarged pupil that she'd had all her life. I never knew the cause for it, just that she had it. It was very noticeable in pictures. She didn't have any other issues that I'm aware of.
I can't speak to the lymph node issue but I would hope that a full blood work up would have shown something.
I think as a mother, our first thoughts go to something bad, like cancer or brain tumor. I know mine do. DD was just dx w/ a lazy eye and will need glasses. Her pediatrician caught it before her eye started to turn and I just know that if her eye had started to turn, I would have sworn it was a tumor.
If your gut is saying you want to get another opinion, I would find a doctor elsewhere that is taking new patients.
BFP #2 10/29/08 ...stillborn via c/s @41w 7/20/09
missing my baby everyday
BFP #3 1/20/10 My angel's little sister Grace Madison was born September 8th 2010 @37w. We're so blessed! Thank you angel for getting her here safely.
BFP #4 12/30/11. Jackson Christopher 8/22/2012 via repeat c/s @ 37w 3d
Hi- My DD has very slight anisocoria which I actually noticed when she was a baby (I work in healthcare and probably noticed more things like that than other ppl might I guess) and I pointed it out to our pedi but because none of her other cranial nerve function was off ( pupil action is related to cranial nerves) and they both reacted equally to light, we had no concerns. It is good to know in case she does have a trauma one day though, just to know that it existed already.
However, around age 2 I started noticing some strabismus (lazy eye) in one eye at the end of the day. I don't really think they're related, but I am more vigilant about the eye stuff I guess, knowing the anisocoria was slightly there & like you, wanting to be sure that there were no underlying issues causing problems. Took her to a pedi ophth. and she definitely had strabismus in that eye but vision was fine so it was a wait & see. We moved 6 months later, found a new dr and he noted it in both eyes and started us patching every night (alternating eyes). We've been doing it a year now & things are somewhat status quo with slight improvement but her vision is still perfect for her age. I will say that I thought she had ptosis in the more notable strabismus eye but they told me that it was just appearing htat way b/c of the alignment of the eye & if there is no serious underlying cause, ptosis is not a huge concern anyway unless the eyelid blocks vision or if you have cosmetic concerns I guess.Also- DD squints that eye all the time, much more the other one- like if I ask her to smile fo ra picture, she'll often squint that eye, etc, or in general if she is making any kind of 'face'
Anyway, I assume they've checked him for neurological abnormalities or vision changes & screened for strabismus, and I think since you are noting things and hopefully taking him back regularly so they can monitor any improvements/changes and you are reporting any other changes, I think you're doing exactly what you need to... Another opinion can't hurt but I wouldn't jump to conclusions that they're missing some big thing. GL!
Also re the lymph node, I would doubt they're related. Kids' lymph nodes are really palpable compared to adults and if you have had 2 pedis assess him, had bloodwork, etc done, I don't know if there is much more to do there either but keep an eye on it & look out for any other signs of infection.
GL it is hard not to worry and wonder if there is some weird rare thing ppl aren't picking up on, I know. Just keep being vigilant like it sounds that you are!
In reference to the other reply, I mean in our area there are only 2 - both of them are in a different down than I live. Idk if I should drive a few hours to take him to another one or not?
I have no clue what they've done - they've dilated his eyes and made him look a few different ways, but that's it - what do those tests consist of? His pupils also both react normally when they shine the light on them.
I have extremely high anxiety and it's worse while pregnant. I don't even know if I have intuition anymore - every little thing makes me think something horrible, and not just with DS.
I have his 2.5 well visit this month so I can discuss my concerns again with the pedi (actually it will be a different one than we saw last time - so another opinion) and then his ophthalmologist appt is next month and I can discuss my concerns again with him again too.