Long sighted child - raised optic nerve

[Scaredaniexty]

Hi all, I was hoping for some advice and someone to talk to, my little girl is 5 and has been wearing glasses since she was 2, due to having long sight, worse in 1 eye.

so every check up has been fine until the last one where they have said they want to monitor one eye due to having a raised optic nerve after taking a picture of both eyes.

She is perfectly fine and the symptoms they told us to look out for she has none, severe headaches, vomiting, lethargic, really unwell, just normal and happy.

so they have said they don’t know if it’s just normal or something else, not saying what it could be if it is.

We have to go back in a few months for another check up before we can be discharged to make sure nothing has changed.

so now I’m panicking it could be something sinister, or are they just being cautious?

Anyone else had similar experience? She is 6 years old.

thanks

I would speak to the opticians again and ask for a referral to the local eye hospital, even just for the reassurance. I thought that was protocol anyway if there was a swollen optic nerve as they need to get these things checked in case it is anything sinister. If they decide not to do a referral, I would personally speak with a different optician and ask them to do an ACES / ACER (I think it's called) which is an in-depth eye exam that you can pay privately for (for my DS, it was £20). I would certainly not wait a few months, especially if they can't say for sure that it is nothing to worry about.

Sorry should have added there was a test at the opticians a few weeks before then we took her to the hospital which is when they saw the issue.

Did you have a check up at the same place last time as the time before?

@guavajuice23 i think you’re thinking of an OCT

Thanks for commenting @theeyeofdoe , It’s been at the hospital since the age of 2 every few months then went for a check up in Feb at the hospital and said that more than likely will be discharged as the eyes were fine.

I thought we were discharged so got a reminder from specsavers who did a full screening took pictures and said that one of the eyes was worse than the other which we know anyway but the eyes were healthy and the eye sight was good.

then got a txt from the NHS saying there was another appointment which we had to use drops for.

went to that and when the Dr took pictures he saw a slight elevation on the optical nerve, which is normal for long sighted people but because it was the first he saw it said we had to make sure that it what the eyes are normally like that before they can discharge, said it could be nothing and perfectly normal or something else, which of course is causing me sleepless nights and not eating much either.

I know that they can’t say don’t worry or it could be this or that and said we need to monitor it and to come back in a few months, had a second opinion on the what should be done from another dr and will be seeing the lead dr when we go back to the check up appointment.

My thought process is that if it were really worrying surely they’d want more tests done before then? Is this sort of thing normal to have a 3 month wait in duty of care?

So there are zero symptoms to say there is something wrong but it’s worrying never the less as my mind has gone to a very dark place thinking the worst.

Any advice would be great.

Lots of long sighted people have slightly unusual looking discs.Lots of very short-sighted people do too,

The only thing which strikes me as being odd though is that someone from the NHS appointments would have seen his discs previously to the last time and would have noted the raised disc. I would check if they've had access to the previous records (I suspect they haven't). I would also check at specsavers as they will also have a photo of the back of the eye.

Thanks for replying, I called specsavers and they said that everything looked healthy in the picss didn't raise any concerns with anything.

That's why when the doc at the hospital found something it shocked me, I'm not sure if the doc was inexperienced as he was fairly young, I know as part of their duty of care they have to cover all bases, and the first time I saw this particular doctor.

I'm going to ask them to bring the check up forward by a month as it's too long a wait and I'll go into specsavers to see if I can speak with someone about the pictures they took. As there were a few.

My head has automatically gone to the darkest place with all this, im just thinking the worst, even though there are zero symptoms to say otherwise.

@theeyeofdoe I've requested the scans from Specsavers and speaking with my husband they've never actually taken scans of the eyes at the hospital, I'm guessing they did it this time as they were going to discharge.

Thinking back they didn't seems massively concerned just that they needed to check that nothing had changed, but at the same time couldn't rule anything out.

Which is scaring me the most and of course I'm thinking worst case scenario.

Small update, I got all the scans and full report from specsavers and sent it to the hospital, the doctors looked it over and said that there was no change and everything was stable from what they took nearly a month after the appointment at the hospital , which helps with my peace of mind that, I know not definitive but it's a positive, which I'll take right now.

That’s great news!

Am a bit late to the thread but we had a version of this which also turned out fine. Our local optician saw elevation on one of DD10’s optical nerves at her yearly eye exam. He personally called to get a next day appointment with an optomologist who confirmed the elevation which resulted in an emergency eye hospital visit and multiple scans. The only thing keeping me sane was that she had no bad symptoms. It turned out that she had calcium deposits under the nerve which could only be seen at a certain angle / scan. Was incredibly grateful at the speed and urgency across multiple depts, even out of abundance of caution. Hopefully the same in your case. Good luck!

Thank you @ChainReacting for commenting, thankfully there are no symptoms either, just a worrying time, I'm hoping they are being cautious before discharge to standard opticians.

The other thing is if they were really worried they'd surely do more tests, bloods, MRI?

That's my thought process on the situation to keep me sane and not drive myself crazy with worry.

@ChainReacting we have just been referred with similar history and have a clinic clinic appointment on Thursday. I’m so stressed. What scans did your DD have and how long did it take ? I‘m so glad your DD is ok.
@Scaredaniexty i hope everything is alright ?

@BlueLimeRun we still have to go back in September for a check up, so still a bit of a wait to go.

But as there are no symptoms or changes we have to use that as a positive.

There was a full screening at the opticians and one at the hospital.

Just stay off google that's the best thing to do, I'm still worried about it but looking at that if it were urgent they'd want to do more tests ASAP.

@Scaredaniexty thank you for your reply and so pleased to hear things are stable. I hope your next appointment goes well.

I’ve read a few articles, some are fairly reassuring. I’m so scared- it feels so long to wait (I know realistically it’s not) and I guess even then we won’t know as we’ll be waiting for a scan. I need to find a way to manage my anxiety…

Why did they refer you for more scans?

Ours was a routine appointment before discharge they said they wanted to check it was nothing sinister, which obviously made us really worried not knowing, but it's now 2 months since the last scan and nothing has changed and no symptoms, sent the scans to the hospital for the docs to look at and also said we are flying away on holiday soon and there was no concern about that which put our minds at ease.

We’ve been referred by optician to eye clinic - I’m guessing for tests ? Another opinion ?

I got speaking with an optometrist online and they have said that sometimes high street opticians will refer people to the hospital for a second opinion on some things, though reading some online forums they have said that this can be common for them to do this.

I was also told because my child has a high prescription due to being long sighted it is common to see and to try and not worry.

It's easier said than done as I have been a wreck too.

Every doctor has a duty of care to make sure nothing is missed.

I hope you get good news, just stay off Google , I spent so much time looking up what it could be that it makes things worse.

It will be ok, I always go to the worst case scenario, and I still have 2 months to go

Thank you so much @Scaredaniexty I really appreciate you taking the time to reply. I’m sorry you’re going through this.

No problem I know what you're going through, my fingers are crossed for you, please let me know how you get on.

They may want to put drops in the eyes to dilate the pupils, but more than likely it is just a duty of care they are being precautious.

@BlueLimeRun how did the scan go today? All good news?

@Scaredaniexty thank you for thinking of us. They were happy with the scans but she needs monitoring. So it feels a bit less stressful.

hoping for a good outcome for you too 🤞

So it’s the appointment tomorrow and I do not think I've ever been this scared in my life, just hoping for a good outcome.

Hope everything goes well. Try not to think of worse scenario.

Hey I’m sorry you’ve had to go through this anxiety. I hope all was ok today?

Just a little update, doc said there was nothing to worry about and finally discharged us

Just how the eyes are due to being so long sighted so all good and can finally relax, thank you all for taking the time to comment it is appreciated