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Children's health

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Original poster

Optic nerve

38 replies

Boymum234 · 30/01/2023 15:21

Hi I was just looking for advice or if anyone has been through anything similar
My ds age 7 went to a routine eye appointment and got told he was being reffered to the ophthamology team at the hospital as one of his optic nerves looked different to the other the optician said it looked abit 'smudged'. I am now besides myself with worry as I've been doing the worst thing possible and googling and convinced myself it's something sinister.

OP posts:

Are your children’s vaccines up to date?

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Unseenentity · 30/01/2023 22:05

Even though optic nerve / optic disc abnormalities are rare, they are taken seriously and should be looked at by an experienced person. The system for this is very risk-averse. Even if the appearance is abnormal it doesn't necessarily mean a serious problem, the people you see will give the further explanation needed

Original poster

Boymum234 · 31/01/2023 00:03

Thankyou for your reply. Yes I'm glad he's getting seen by a professional. Just can't help but fear the worst hopefully I'll get more answers at the appointment.

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Kaiken · 31/01/2023 02:20

How is his skin? Does he have some hyperpigmentation spots? Small milky coffee coloured spots called café au lait spot? How is his height? He is maybe smaller than other kids his age?

Original poster

Boymum234 · 31/01/2023 08:07

Thankyou for your reply. His skin is fine and he's normal height for his age

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Kaiken · 31/01/2023 09:47

Great, because there is a genetic disease called NF1 and 15 to 20% of the kids develop an optic glioma.
Almost all kids with nf1 have multiple ( More than six) café au lait (CAL) macules and are generally smaller. The lack of CAL and a normal size point away from NF1.

Original poster

Boymum234 · 31/01/2023 12:29

He did have his appointment today but got to the hospital to be told it had been cancelled! Very frustrating

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Original poster

Boymum234 · 07/02/2023 08:27

Bump .
Appointment rearranged for Thursday. Been so worried

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Kaiken · 07/02/2023 18:03

Well, not long to wait now. Thinking about you

justasking111 · 07/02/2023 18:08

Hoping you will be relieved after the appointment

Kaiken · 10/02/2023 20:08

@Boymum234 How are you OP? What did the doctor say?

justasking111 · 10/02/2023 20:44

Ah yes how did it go

Original poster

Boymum234 · 13/02/2023 20:05

Got the date wrong it is this Thursday coming so still waiting unfortunately. Do any of you have a idea what sort of tests they will perform? I'm just curious or if anyone else has been through this I have health anxiety and reading what I have on the Internet has had me worried beyond belief. Thankyou both for asking

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underneaththeash · 13/02/2023 21:47

Could be some optic disc drusen or myelinated nerve fibres at the disc margin or the disc may just be a bit tilted.

OP they’re likely to check vision, put some drops in to make the pupils larger and have a good look with a microscope and lens. If it‘s just one side of the disc it’s unlikely to be anything too serious.

CatOnTheChair · 13/02/2023 22:02

We've been through this with DS1.
The "urgent" referral took 4 months.
They did a basic sight test, used drops to dilate his pupils, had a really good look at his eyes and took photos, and then a chat with the consultant.
Verdict: come back in 3 months. That was an exact repeat of visit 1, with a conclusion "we think it's just the way he is, come back in 3 months".
Third visit was more of the same - except we are going back in a year.
They kept talking about an additional peripheral vision test, but kept canceling the appointment, and no more has been said.

Original poster

Boymum234 · 13/02/2023 22:17

@underneaththeash I have read somewhere that one sided is less likely to be anything serious. And it is only 1 side he is short sighted also but no changes in vision since his test last year.
@CatOnTheChair they first noticed his December 28th had 2 cancelled appointments and one rearranged due to illness now got this one his was also meant to be urgent although optician said not too worried. Think I just worry more as the things I've seen on Google are terrifying. I've seen some have been offered a mri but I suppose it's who you see and what the conclusion is. They said expect the appointment to be around 2 hours long.

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CatOnTheChair · 14/02/2023 06:49

2 hours sounds about right. There was LOTS of waiting around tho.

Original poster

Boymum234 · 14/02/2023 12:02

@CatOnTheChair oh really! Was your ds spotted at a eye appointment? My sons was at a routine eye appointment he said he would put it through as 'urgent' as if not I could be waiting months although its been nearly 2 months anyway. Someone on another post on this subject said there has been a lot of refferals in the last year.

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familyissues12345 · 14/02/2023 20:41

Hi @Boymum234 ,

My son has an optic nerve Glioma (a pp spoke about it earlier). He doesn't have NF1.

Come back and chat to me if that's the diagnosis that your little one receives, but for now I hope to reassure you that he's doing really well and has been stable for almost 7 years.

Take care x

Original poster

Boymum234 · 14/02/2023 20:42

@familyissues12345 how did it come about of your son getting diagnosed if you don't mind me asking?x

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familyissues12345 · 14/02/2023 20:46

Don't mind being asked at all!

He was diagnosed at 5, after a deterioration of his vision. Initially he was sent for a test with electrodes, which showed a delay between his eyes and brain, then referred for an MRI. His eye specialist was adamant nothing would come of it - ONG are very rare, especially with no NF1 diagnosis.

He went on chemo a year later due to growth, which lasted 18 months. He's now a strapping 14 year old!

Original poster

Boymum234 · 14/02/2023 20:49

I took my son to a routine eye appointment where the optician noticed optic nerve one side looks abit different he said abit smudged said he was not too worried but had to reffer us anyway. He hasn't had any deterioration in vision ect as of yet no headaches or anything either. I've read online and just thinking the worst!x

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Original poster

Boymum234 · 15/02/2023 13:56

Well it's the day before and I'm besides myself with worry! A handhold from you all would be great x

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Original poster

Boymum234 · 15/02/2023 15:02

Can I ask did any of yours get picked up at a routine eye test?

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CatOnTheChair · 15/02/2023 15:20

Yes,it was a standard sight test that picked it up - he wears glasses so is there fairly regularly and it was the same optician as usual - soshe had seen a change.
The chances are, it's nothing. They just need to refer to the specialists is it's out of their field of expertise. Worrying isn't going to help, so if you can take a deep breath and do something nice with you child tonight, do it to take your mind off things.

Original poster

Boymum234 · 15/02/2023 16:12

Sounds a very similar situation to my little boys he's short sighted so wears glasses. It's not something I've heard of before but since being on here I've seen alot more people have experiences with it. What was said about your ds if you don't mind me asking was it swollen the nerve? When I asked what he meant by different he said he could not see swelling it looked like a little smudge but said some people's eyes are just like this. Thankyou so much for your advice and sharing your experience it really does help me

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