Inflamed optic nerve?

[WorriedMumofTween]

DD (11yo) went for what was meant to be a routine eye appointment and the optometrist couldn’t visualise the optic nerve properly on one side. She did a scan and images which showed similar and she’s got a second opinion within the practice who also agreed. This apparently indicates possible swelling of the optic nerve. This is new since her last eye test last year. There’s a query about raised intercranial pressure.
DD has a history of headaches and nausea but she saw paeds neurology in December who diagnosed her with migraines and advised us to reduce her sugar and give paracetamol if needed. They have actually improved in the last few months. She was diagnosed with Myers Irlens and she has tinted glasses which help a lot.
Optometrist has done an urgent referral to the local hospital who should be in touch soon. Just wondered if anyone had similar experience and what the diagnosis was?

This isn't that uncommon a situation. Understandably the high street opticians aren't comfortable holding the ball when there's a potential serious diagnosis, but very likely the outcome is that the review examination by the ophthalmologist may be completely normal, or something benign. If there's any uncertainty they may do a scan of the brain.

Thank you for replying. My sensible head on says this is new in the last 6 months (definitely not noted at her last eye test or paeds review in December). Her symptoms started before this was seen and have been better in recent weeks. The optometrist said it may not be worrying but she couldn’t rule out raised intercranial pressure but I know that’s relatively unlikely. I am a nurse so I know a bit but it’s not my area of expertise. Trying not to consult Dr Google but I did read it can happen after a virus - DD had a nasty chest infection from February that’s taken weeks to shift.
We are booked in for tomorrow afternoon so we should have some idea soon.

My dd had this (both headaches and irregular/inflamed optic nerve) and was referred for an urgent MRI. She then had to have two lumbar punctures (first one failed) to check her interracial pressure. Her MRI and pressure was fine and they monitored it for 2 years but it has remained the same so she has been discharged. We were told she had drusen (harmless) and that's just how her optic nerve seems to be.

It was a very stressful time but a good end result. Fingers crossed yours will be too. Xx

Thanks for sharing your experience Cloverforever. It sounds like it was really stressful but I’m glad she was okay in the end.

The most likely thing is that she has optic disc drusen on that side (they get bigger during puberty), but given her headaches I'm really glad that she's been seen more quickly. Thankfully ophthalmology is one of the NHS areas that's not bad at the moment.

@WorriedMumofTween let us know she gets on.

Cannot knock the service. Seen on time, multiple tests done but in and out in 1.5 hours. Confirmed it is a calcium deposit and nothing sinister. Thanks for all your support.

Fab, best possible outcome.

Yes. Such a relief! We’ve just been relaxing today, both shattered!

Sorry to jump in op but can I ask how/who diagnosed your dd with Myers Irlen?

I think dd might have it but not sure where to go

I was diagnosed with it in my 20s when I was assessed for dyslexia at uni. I thought DD might have it so I checked and my local opticians do it. Had to pay for it (£40ish I think) and then for the glasses but it’s really helped. I think it’s a case of ringing sound or checking online. Don’t think most chains like Specsavers offer it.

Thanks @WorriedMumofTween that's really helpful

Not a problem!

Most hospitals will have a 'funny optic discs' clinic for tings spotted by optometrists. Optician should refer her to be seen by a paediatric ophthalmologist. Most of these 'abnormal' discs turn out to be nothing (or something called Drusen).

Hi just wondering if anyone can share experience. My DD (9) routine eye test referred as swollen nerves just been for the follow up and done a number of tests including ultrasound and said that the only thing they could find was that they are not “normal” and would refer for routine MRI to completely rule out anything sinister. If that’s fine then was almost like a “we do t k ow” situation. She has no headaches etc just moody sometimes haha feel slightly relieved but then not if makes any sense

@FlakyTiger some people do just have funny optic discs (like some people have wonky ears!)

they sound thorough.

My son, 12, had an eye test in July at the opticians and they referred him for swollen optical disk. He has been seen today at the hospital and had scans and tests. All they have said is that they want to refer him for an MRI as a precaution. He has no symptoms and the pressure is his eyes is fine. Can't stop crying and fearing the worse though!