DD referred for mri due to elevated optic nerve.

[Clo1906]

Hi looking for some advice if anyone has experienced anything similar as I have been on dr Google and now in a panic! Soooo.....
My 4 year old daughter failed her eye test at school. I took her to the opticians and they referred her onto the eye hospital because they said she had elevated optical nerves and occasional headaches. We went to the eye clinic and seen the consultant and she referred my daughter for an emergency MRI because of the elevated nerves. The appointment has come through and is a week away. I just want to know if anyone had been through this and what was the outcome? Thanks

my 9 year old daughter recently had the same thing. She was complaining of eye pain over Christmas so we took her to the optician who sent us straight to a and e as he hadn’t seen a swollen optic nerve before, she was almost blind in one eye but the other eye had been compensating so she hadn’t noticed. We also were referred for an emergency mri which was otherwise clear. We were then put on a course of steroids for three months, the first three days of which were given in hospital. Her diagnosis was optic neuritis which in most children is an isolated event and is easily treatable with steroids.
My daughter has gone on to have some other health problems but her case is very rare, it’s far more likely your daughter will recover and be absolutely fine. Thinking of you and your family, it is a stressful time but you’ll be out the other side before you know it.

Does elevated optical nerves mean the same as inflammation/pressure, do you know?

Hi thanks for your replies! Yes I think it does mean the same as they mentioned pressure.
alishylishy i have also read that this could be the start of other health problems. I hope your daughter is well at the moment. Its all very stressful to make matters worse we are due to fly to Greece Thursday night and the radiologist secretary said that the radiologist will let us know after the mri if all ok to fly. Everything is up in the air and I can do nothing but think about it. Should of stayed of Google!!

Sorry, pressed Send too soon.
My daughter is 10 and has been diagnosed with Idiopathic Intracranial Hypertension (IIH). At a routine eye examination the optician noticed blurring (pressure) at the back of both her optic nerves and she was referred to the eye hospital. After lots of tests (many different eye examinations, bloods, MRI, CT scan, lumbar puncture) she was diagnosed with IIH. They don't know what causes it but basically it's where there is excess cerebral spinal fluid which then puts pressure on the back of the eye, hence why it's often detected during routine eye tests.
My daughter didn't have any symptoms like headaches, we were just lucky it was detected before any symptoms (like headaches/nausea etc) started up. She is on medication to reduce the production of CSF which is working so far. There has been no damage to her sight thankfully.

I had an enlarged optic nerve spotted by an optician when I was 29. Had further tests at the eye hospital where I was told I would have lost vision if it were serious (i hadn’t lost vision; only symptom were headaches). MRI came back and I was informed I had excess fluid in my optic nerve / around my brain possibly if I remember correctly(?) There was no known cause, possibly hormones and it just went away on its own. There was talk of getting a spinal tap to diagnose the face there was extra fluid but I didn’t see that necessary. Hope everything goes well with your daughter. X

Glad to hear the medication is working for your daughter and you have made me feel a little more at ease as all Google was flagging up was with brain tumors which has obviously sent my anxiety through the roof! I have no experience when it comes to eyes as my eyes test are just in and out. So I am little taken back by it all and didn't know what questions to ask

On the 1st optician appointment he said she was a little long sighted and prescribed glasses for reading and writing but me and the school hadn't noticed any problems with her vision before that

It's hard to not go straight to freaking out about possible tumours, we were the same!
At first, they thought it might be Drusen (benign calcium deposits on the eye) but the CT and MRI on the back of the eyes ruled this out. They also checked all the veins in the brain to rule out any blockages etc. Everything came back clear so I think the only thing left to test for was IIH but they needed to do a lumbar puncture to check the opening pressure to confirm (or not) that it was IIH.

The excess fluid on the brain is either due to an overproduction of CSF or because it doesn't drain away as efficiently as it should.
They don't know what causes it but it's usually found in woman during their childbearing years. It can affect children and men too but not as common. I'm hoping it's a hormonal thing for our daughter and that it will clear up in time.

Exactly our experience too.

Fingers crossed it clears up for you daughter! We are just sitting ducks at the min. She is fine in herself just the occasional head ache so fingers and toes crossed its something easily treated 🤞

Good luck to you too. It's impossible not to worry, it's all very recent for us so I can still feel the angst surrounding it all.
I meant to say that IIH seems to be much more prevalent in overweight people and some consultants might dismiss it in someone who isn't overweight - especially if they don't have much experience with the condition.

My daughter is tall and slim and is considered an atypical case but from what I've read, IIH kids tend to not be overweight.
Look up Drusen too, this is much more common than IIH and can present in a similar way on eye tests.

she’s doing really well all things considered, we have a potential diagnosis now which is brilliant as we, like you, were in the dark for some time.
She has a demyelinating illness similar to MS - but this is super super rare, as is a tumour. Please try to put the worst case scenario’s to the back of your mind, wishing you and your daughter lots of luck and love on this shitty journey, I hope it ends really soon and with a positive outcome for her 🙂

I know a number of children for whom this has happened to, including my ds, and they've all been clear on the MRI.
Hope that will be true for you too.

I've just been through this with my DD. Optician spotted swollen optic nerves and referred us to the hospital. I'd decided that they were just being cautious so wasn't worried at all. The ophthalmologist confirmed drusen but all bilateral papilledma. She had an MRI which showed narrowing of her transverse sinuses (that help the taking of fluid to and from the brain), pressure behind her eyes and partial empty sellar; in layman's terms everything in her skull was being squashed. She had a lumbar puncture which showed increased pressure and she's now on medication for IIH. It shocked the life out of me as I was quite convinced, even at the point of the MRI, that they were being cautious.

It's not been the easiest and she's still not managing full time school but we're making progress. Latest tests show a small reduction in swelling but we know they've been swollen for at least a year so it will take time for the swelling to reduce. I'm just hoping she doesn't end up with irreversible damage to her sight. It's very rare, about 60 kids a year are diagnosed, so there's not a huge amount of research out there. The opticians were shocked when I rang to update them, all they could say was 'it's vanishingly rare!'. The worst part for me was at the start, the hospital had a terrible habit of ringing me in the evening saying she needed to be in the next day, you know something is seriously wrong when they do that. It's calmed down now though. Fingers crossed for your DC and happy to answer an questions you may have. I got my DD through the testing with a lot of bribery, my bank was not my friend!

I have hardly slept for 2 weeks waiting for the MRI. I have been trying to get a private one sooner but there isn't any. We are due to fly the evening of her MRI. Its all very worrying and stressful. We had a letter posted to us from consultant and it stated her vision was 6/9 and that the optic nerves have irregular margins greater on the right. Which i take it as the right side is swollen than the left. What ever I am researching keeps coming back to papailldema which was making me panic. I hope the swelling continues to reduce for your daughter and she can get back to school. Bless her

I can understand your worry. All along I was told it won't be papilledema and then all of a sudden it was (the consultant graded it at the first appointment). Everything you read about it is very scary but the reality is that my DD is walking around with it right now and she's ok, not perfect but ok! I think it's because they call it a 'medical emergency' that makes it so scary. We do have to be mindful still and pay attention to her symptoms but I'm not nearly as worried now as I was before, we're learning to live with it.

I hope you manage to have a good holiday despite everything that's going on. The MRI will get to the bottom of things so at least you're going in the knowledge that your DC has had the necessary tests at this stage. And stay away from Google! Putting papilledema in Google will only send you down a scary rabbit hole (I know, I did it too!).

My 3yo son was sent straight to A&E after a routine eye appointment with a similar mass behind one eye. After an MRI, it was diagnosed as morning glory anomaly. It has never grown any larger (DS is now 11), and although he does now wear glasses, there are no other effects. Thinking of you. It's very scary to be in this situation.

I didn't mention it my previous posts but my daughter was also diagnosed with Papilledema. She was a stage 1 in both eyes but thankfully there has been no damage to her eyes. She has regular ophthalmology appointments at the hospital and they can see that the IIH medication has reversed the Papilledema already.
It's horrible when you don't have the full story and it's natural for your thoughts to run away from you, but it sounds like the hospital are on the ball with going straight for an MRI to get some clarification.

You have all calmed my nerves that even if it papailldema that it is treatable so thank you! Can I ask if any of your children had any other symptoms such as headaches or nausea? My daughter has the odd headache probably about 2 a month but apart from thats it I think

Glad it's helped a little. My DD was having regular headaches, particularly at night and was very nauseous. We had one episode where her sight blacked out completely (but she was in a hot shower, so I thought it could have been a near fainting episode). On probing further she was having visual disturbances and her hearing was going 'funny' at times. This has all lessened with the medication but she misses about one day a week of school because she's exhausted and due to headaches. As I said, it's not perfect but we're managing. She also has drusen which can make the optic nerve edges look fuzzy.

snoodandgloves, sorry I don't want to derail the thread but can I ask how long it took the meds to reduce your DDs swelling? We're over 6 months in and I really was hoping we'd see more of an impact by now. She's only on a low dose of diamox though as she struggles to tolerate it (250mg).

Brightsparkes: DD has been on Diamox for about 6 months so it didn't take too long. She started off on 250mg a day, then up to 500mg for a short while and back down to 250mg once the ophthalmologist saw that the Papilledema went to stage 0.
She hadn't developed any symptoms though so maybe this is why the medication worked quickly for her. Her opening pressure was 40, what was your DD's?
What side effects is your DD getting from the Diamox? DD had pins and needles in her fingers and toes which she found pretty uncomfortable and annoying but she doesn't complaint too much about it now.

Brightsparkes: That sounds very difficult for your DD, I'm sorry to hear it's affecting her like that.

She was on a higher dose but she was getting up to wee in the night, tingling face, numb lips and cheeks and generally feeling horrid. She does have sensory issues though so it's hardly surprising that she found the side effects a challenge! She's got stage 3 paps and her opening pressure was 36, they took it down to 24 but it took four attempts at the lumbar puncture over a couple of weeks (that wasn't the most fun!). I'm glad the diamox worked so quickly for your DD, that's brilliant news. They've said there's a chance that we'll get her into remission and it won't come back but the longer it continues like this, the chances are that it's going to be a long term thing. She's escaped pressure monitoring at the moment and I'm hoping it stays that way.

It's a horrible illness but it's not the end of the world, it just means adjusting to living with it. Both her consultants are great and have encouraged us to keep everything as normal as possible for her and to work within her limitations.

Sorry for the derail OP but I hope these snippets help to show that life goes on, my DD is currently out playing golf!

No don't be sorry. I am taking this all in incase this is what happens with my daughter. I just want Thursday to come to find out whats what and weather we are going on holiday or not. Its being left just waiting thats driving me mad. Did you all have a wait between hospital appointment and MRI or did they do quite soon after?

DD's ophthalmologist wanted paeds to admit her there and then for the MRI. We waited around for ages at the hospital whilst discussions took place. I actually didn't know it at the time. I only found out when I got the letter outlining what had happened at the appointment and it was clear that he had been overruled by paeds. I don't know why I needed to know but maybe he was covering his back? I knew something was amiss but was concentrating on keeping DD calm and acting as normal as possible.

The MRI was just over a week later and I got a call in the evening about 3 days later asking us to go in the next morning. Unfortunately we did have a very disruptive couple of weeks with us having to go back and forth because of difficulties doing the lumbar puncture. It was all very reactive because they were trying to get the right staff sorted and eventually we ended up on the children's oncology ward where they managed it. There were various appointments for around 6 weeks and it felt very disconnected and disconcerting but I recognise that they needed to get her in the system and under the right consultants. It has been much better since then.

Fingers crossed you get to go on holiday! DD was treated as an emergency because she was symptomatic, the MRI showed clear signs of high pressure and she had grade 3 paps in both eyes. Prolonged high pressure can cause blindness so they needed to act quickly. I know I've already said it but IIH really is very rare in children. Sometimes it can be weight related, particularly in teenage girls but my DD is 11, on the 50th centile for weight and 98th for height, so it appears to just be bad luck. I'll be keeping my fingers crossed for you.