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When to worry about sight problems?

(18 Posts)
moosemama Mon 08-Jan-18 12:42:02

Ds2 is 13 and has Hypermobility Spectrum Disorder. His health is affected in a multitude of ways, including some visual disturbance and light sensitivity and he spends half his life at hospital appointments or off school due to his health.

He was under the eye department of our local hospital between the ages of 3 and 10, for various reasons, some of which the consultants were unable to find a cause for. There was also a constant battle between the optometrists and the orthoptists about whether or not he had amblyopia. His left eye has always been the main problem and we were told that they suspected damage to the shape of the eye, caused by repeated chalazion. We did not know at the time that he had Hypermobility Disorder.

He has visual disturbances and light sensitivity for over a year and these are believed to be related to problems with his autonomic nervous system. However, he has reported a fast deterioration in his general vision over the past three months and due to constant hospital appointments, etc for other issues, he only got to see an optician last week.

His prescription in the right eye is completely unchanged, but his left eye has gone from

Sph. +4.75 to +5
Cyl. -3.00 to -3.50
Axis 175 - to 172.5

In addition, the optician told him that his left eyeball is significantly smaller than his right, which is not something that has ever been noted throughout all his time under the eye hospital.

He says if you cover his right eye he now can’t see anything but blurs with his left.

Unfortunately, his Dad took him to the appointment and without my knowledge, dropped him off and went back to pick him up, rather than staying with him and ds has been hopeless at relating back what the optician said to him. The optician that saw him is now on holiday, but I have just spoken to ds’ GP who was concerned enough to book him in for an urgent appointment tomorrow to organise a referral back to the hospital for a thorough check. Unfortunately, she wants a report from the optician which can’t be produced until the end of the week when she is back off holiday.

I have never worn glasses and my eyesight is still fine at the age of 47, so I don’t really know what is and isn’t normal in terms of worsening vision. Having read up a bit I am worried that it could be amblyopia and as he effectively can’t see out of his left eye at the age of 13, I am concerned he may lose sight in that eye completely if something isn’t done, but I don’t know if that is just me overthinking things.

I would be grateful for any advice that people with more experience of vision issues might be able to offer.


dementedpixie Mon 08-Jan-18 12:47:39

Does he have glasses then? He is long sighted in the left eye and if he has glasses then they will help him to see properly. His sight has got a little worse (but not too major) i.e. from +4.75 to +5. The cyc figure is to do with amount of astigmatism and the degrees just tells where on the eyeball the astigmatism is.

dementedpixie Mon 08-Jan-18 12:50:38

P.s. my dd is long sighted in both eyes and has worn glasses since 18 months old (is now 14). The glasses help her to see normally

moosemama Mon 08-Jan-18 12:57:24

Yes he has always been long-sighted, although only a touch in his right eye. He has worn glasses since he was three with only minor adjustments in prescription. He said the optician said it was a significant change that now puts the sight in his left eye in the high severity category.

I thought long-sightedness was the one you stood a chance of getting better as you get older, not worse and if it is worsening, is that because he’s developed amblyopia ie his brain is starting to ignore signals from that eye?

If it’s not a major change in prescription, I am concerned that he is relatively suddenly unable to see anything with his left eye other than blurs and colours and wondering if perhaps it’s not eye related, but possibly more problems with his autonomic nervous system. I know the light sensitivity is to do with his pupil reactions not being right, which is autonomic and wondered if the two thinks might be connected.

It doesn’t help that he can’t remember exactly what the optician said, other than there was a significant change in the vision in his left eye and that that eyeball is a lot smaller than the right. We were told when he was younger that his left eyeball is mishapen due to pressure from series of large chalazion, but no-one ever said it is ‘significantly smaller’ than his right eye.

AugustRose Mon 08-Jan-18 13:11:50

DD2 and DS2 are both long sighted. DD in her right eye only and DS in both eyes. The presciprion hasn't changed massively, the reason they may say that is because it has gone over +5 which is when the lense is classed as complex (so I believe) also, the change from cyl 3.00 to 3.50 can be noticeable in new glasses. Are the new glasses thicker? When DS (6) went from +6.00 to +6.50 last year his lense thickness increased and it caused some difficulty for a little while until he got used to them, because the magnification is higher then the light does get it more.

You can call the hospital direct to arrange a retest - although I know that is a pain and waiting times are not great - if he really thinks it is not improving or significantly worse. Unfortunately we have had different hospital opticians who have changed prescriptions only for them to be changed back 6 months later by someone else.

Katescurios Mon 08-Jan-18 13:16:17

The prescription change is quite minor, did they mention anything about visual acuity? Or give you V/A score is will look something like 6/60 when written.

AugustRose Mon 08-Jan-18 13:17:26

Also, I was told that childrens sight can be improved until around age 8/9 when the eye finishes developing, after that they remain steady. DD2 was discharged from the hospital last year age 9 and DS2 will probably be discharged later this year age 7 as his eyes have stayed the same for close to 2 years.

moosemama Mon 08-Jan-18 13:36:45

That’s all the info I have from ds. I am so mad with dh for not going in with him.

His new glasses aren’t ready yet, so I don’t know if they’re thicker. The lens in his left side has always been pretty thick though.

I think what’s more worrying is him noticing a big loss of vision, rather than the actual prescription. I know people with dysautonomia can have vision issues and given what you’ve all said re the prescription change not being major, I’m wondering if we’re barking up the wrong tree thinking it’s his eye, rather than an autonomic issue, iyswim?

Katescurios, yes, I just noticed that on the form. It says Aided VA, Dist 6/4 for both eyes. There is also BVD 11.0, but I have no clue what that means.

AugustRose. He was discharged from the hospital at the age of 10, when they decided his vision was stable. His prescription has barely changed since - until now and his right eye is still exactly the same, it’s just his left that has changed and he says he can’t see anything at all if you cover his right eye, which he says is new for him. He couldn’t read all of the top row of the eye chart when he did the test, whereas before he’s always been half way down-ish. The thing is, he does have very bad light sensitivity, so, given that they shine lights in your eyes for the tests, I do wonder if that could possibly have a bearing as well.

Katescurios Mon 08-Jan-18 13:45:08

OK, visual accuity looks good from those numbers.

A very simplified explanation would be that VA is how focused your vision is and generally is measured with your glasses on. The measurement you gave means he can read at 6 metepres what someone with normal vision can read at 4.

To give a comparison my VA in right eye with glasses is 6/48 meaning I can read at 6 metres what a person with normal vision can read from 48 metres away (my eyes are crap!!!)

If the optician is in any way concerned they will tell you there and then that they are referring you to the eye hospital. They do tat by writing to your GP stipulating whether or not its urgent. I've been referred at least 5 times by opticians and each time have been contacted by the eye hospital within 2 weeks giving an appt to see an opthalmologist.

moosemama Mon 08-Jan-18 13:55:39

Thank you, that is reassuring. It is sounding more like the blurred vision is nothing to do with his actual sight then. Which is good in one way, but means we are unlikely to get any help with it as paediatric autonomic specialists are a bit thin on the ground in the UK and our GP won’t refer out of area.

I think I am just worried because vision is an area I know absolutely nothing about, whereas I know quite a bit about his other health problems because we have very similar diagnoses.

Thank you for explaining it, it has definitely helped to reassure me. flowers

Rodders92 Sat 13-Jan-18 22:31:00

Hi op, the BVD is for back vertex distance and this is the distance in mm that the back of the lens in the glasses needs to be from the front surface of the cornea. 0.25 dioptre change in the longsight is not a significant change, the astigmatism has increased slightly. If the aided vision is 6/4 in each eye that is a very good level of vision with the glasses on. For a diagnosis of amblyopia that needs treatment the vision in the weaker eye should be 2 lines or more worse on the vision chart than the stronger eye. Most longsight is due to the length of the eyeball being shorter than average which is why there is a tendency for longsight to reduce as the eye grows , as your son is 13 his longsight is not likely to change much from now.

moosemama Mon 15-Jan-18 13:29:41

Thank you Rodders92.

How would I know how many lines difference there was between each eye on the vision chart and is that with or without glasses? He thinks it was definitely more than two, as he knows couldn’t read all of the top row with his left eye, but he has memory issues, so hasn’t been great at remembering what happened and what was said during the appointment, other than that the optician said she was concerned.

His right eye has remained unchanged for years now and is:

Sph +2.75
Cyl -0.75
Axis 165

The optician has sent a report to our GP and we are seeing them tomorrow to follow it up. We collected his new glasses on Saturday and he says they are like magic, he can see so much more clearly with them.

Is it normal for eyesight to worsen, without any obvious cause, to the extent that it’s obvious to the individual across a three month period? I think that’s what bothers me, not the degree of change, but how suddenly it seemed to happen. He went from being able to see fine, to telling me he was having problems, to then not being able to see anything but blurs.

Rodders92 Mon 15-Jan-18 19:04:27

Hi moosemama on the sight test form it will record his vision aided i.e with his glasses on, may also record unaided vision if tested without his glasses and the previous VA which is the vision measured at his last eye test, was the 6/4 in either eye from his last eye test or his latest one. If you have the figures to hand I can come back and try and answer your other questions . You can pm if you would prefer

moosemama Mon 15-Jan-18 20:32:39

Unfortunately his VA isn’t on his previous prescription for some reason.

His current one has his aided VA (6/4 for both eyes) but not unaided.

Rodders92 Mon 15-Jan-18 21:40:09

Hi if the prescription says that both eyes saw 6/4 with his glasses this is very good vision in both eyes, Is vision in his left eye blurred with his glasses on or only without his glasses. He would not be developing amblyopia at the age of 13 , amblyopia happens when something interferes with normal development of vision during what is called the critical period which is the first 7/8 years of life. He has a much stronger lens in his left eye this difference in prescription is called anisometropia , anisometropia can cause amblyopia in young children but if he has previously seen well in his left eye with his glasses on any loss of vision in this eye at the age of 13 is for another reason and would suggest he needs referring back to the hospital. If the optician you saw is on holiday is there another optician in the same practice who can provide the information for your GP

moosemama Tue 16-Jan-18 14:53:57

The vision is completely blurred in his left eye when he hasn’t got his glasses on. If you cover his right eye, he can’t see anything at all.

He was under the hospital from the age of 3 to about 10, with weekly apptointments at first, then monthly and there was a constant battle between the orthoptist and optometrist about whether or not he had amblyopia. They started to patch, then the optometrist stopped them. That’s what makes me wonder if they got it wrong and he did have amblyopia after all.

The hospital optometrist struggled to get his prescription right and at one point it seemed to change even between weekly appointments with the same optometrist.

He had recurrent blepharitis and chalazion that caused scarring of his eyelids and also put pressure on his eyeball. We were told one of these most likely caused damage to his left eye through pressure. He has mild ptosis of the left eyelid, which they also think is due to the scar tissue from the chalazion.

There was also an issue with the sclera. Apparently it had an uneven surface, similar to a golf ball and the consultant said he’d never come across anything like it before. He had false tear eye drops for a while and obviously we were doing all the warm compresses and eyelid/lash cleansing for the blepharitis as well, but eventually they told us at a routine appointment that it had appeared to just resolve on it’s own. He told me last night that his eyes have been feeling gritty on and off for a while, so I do wonder if that problem might have returned. They don’t look red at all, he just says they feel itchy and gritty. Hard to know if it is the same thing as he was so little last time that it wasn’t easy for him to tell us what he was experiencing.

We were told last Thursday that the report had been sent to our GP but, annoyingly,it hadn’t arrived when we went for his GP appointment this morning. There is only one optician at the branch he went to, as it’s a tiny village store. I asked if someone else could help, but they said no, I had to wait for the optician to get back off holiday.

GP is going to let me know when the report comes in so we can discuss it over a phone appointment. She had a look at his eyes today and there was no sign of irritation, but as she said, she’s not really trained or equipped to examine them in detail.

I really hope it’s nothing to worry about and he just got the wrong end of the stick. We spend half our life at hospital appointments as it is and I’d prefer not to have to add yet another department to the seemingly ever growing list of departments he’s under.

Rodders92 Wed 17-Jan-18 18:52:46

Hi moose. If his left eye can see well with the glasses on but not without the glasses this is likely to mean that the lens in his left eye is having more problems focussing than it has in the past. Other causes for reduced vision would not cause this difference between vision with and without the glasses. Lumps and bumps on the lids for whatever reason can cause astigmatism and this astigmatism will change as the size or position of the swelling changes. Gritty eyes can happen with allergies, blepharitis and dry eye, so hopefully you will get an appointment soon for this to be looked at. I don’t know if you usually get copies of the letters from the eye hospital but if not it’s worthwhile asking for them. If you do get any more info back from your GP that you want to ask about please do

moosemama Wed 17-Jan-18 19:17:22

He actually said he feels like his left eye wouldn’t focus with his old glasses on and kept opening and closing like a camera lens but couldn’t actually fix, iyswim. Without glasses it doesn’t seem to be able to focus at all and with his new ones he says it’s better.

I suspect he has been a bit ‘teenagery’ about keeping his lids clean, so the blepharitis could have flared up again. I have had a talk with him about that this evening and he promised to do better. We are still going to get it looked at, but in the meantime he is going to up his game lid-cleansing wise.

I didn’t used to get copies of the letters from the hospital when he was younger, but am much more savvy about things like that these days and will make sure I do this time.

Thank you so much for taking the time to explain everything to me. I really appreciate it. flowers

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