Ok, so help! Has anyone experienced anything like this?
My daughter is now 19 months old and was born with no tears in her right eye. I took her to our GP when she was a few months old, and he suspected a blocked tear duct and referred us to an ophthalmologist.
We’ve now seen four ophthalmologists, and we’re still no closer to answers.
Here’s our journey so far:
Ophthalmologist #1: Said it was a blocked tear duct and wanted to perform a procedure under general anaesthetic to unblock it when she was 12 months old. He didn’t examine her eye or listen to my concerns. He advised using antibiotic drops if it appeared infected.
Ophthalmologist #2: We ended up in ED one day because the inflammation became so severe that I knew something wasn’t right. They recommended a second opinion. This ophthalmologist said it definitely wasn’t a blocked tear duct and that the red areas appeared to follow the path of the trigeminal nerve. He recommended seeing another specialist because he wasn’t familiar with the condition.
Ophthalmologist #3: Suspected congenital corneal anaesthesia (CCA) and referred us to another specialist.
Ophthalmologist #4: Performed tests in the room, arranged an MRI (which came back normal) and examined her eye under a microscope. Ulcers were found on the cornea, thought to be due to dryness, and she was treated with Chlorsig and steroid drops.
Unfortunately, this last specialist hasn’t been able to give us clear answers about what the next step is, despite us trying to find out. We’re essentially stuck, not knowing where to go from here or how to get a diagnosis.
Her symptoms:
● She has never produced tears from her right eye.
● Redness and inflammation come and go, always affecting the same areas on the right side.
● I’ve noticed the redness flares when something gets in her eye.
● After flushing the eye and using lubricating drops, the redness settles.
● She has developed corneal ulcers, which were thought to be caused by dryness.
She’s now 19 months old, and the underlying problem hasn’t changed.
I’m currently using lubricating drops hourly, and thankfully the redness is much less frequent. The photo shows a previous flare when she was only using Chlorsig, before we started hourly lubrication.
My questions are:
● Has anyone’s child had congenital corneal anaesthesia (CCA), or something similar?
● Can CCA be present despite a normal MRI?
● Could another condition cause an absence of tears from birth, recurrent inflammation and corneal ulcers?
● Has anyone been through a similar diagnostic journey and eventually found answers?
● Can anyone recommend a specialist who has experience with these conditions, particularly in children?
In Aus. We feel like we’ve hit a dead end. One specialist wanted to operate on a presumed blocked tear duct, another said it definitely wasn’t a blocked duct, and a third suspected a rare condition. Now we have a child with ongoing symptoms and a history of corneal ulcers, but no clear diagnosis or plan for what happens next.
We’re not looking for a diagnosis from the internet. We just want to hear from anyone who has experienced something similar or can point us in the right direction.
We just want answers and to make sure we’re doing everything possible to protect her eye and vision.