Really need some hand holding, absolutely terrified

[itsalwaysunny]

Hi there, I've been a member for a little and haven't posted before but I'm reaching out today for abit of support/ hand holding.

My DD is nearly 3 and myself and DP have noticed recently that she has a lazy eye, we booked her an appointment and she was referred to the optometrist after seeing a normal opticians. Went to appointment today and they were able to determine she has limited to nearly no vision in her left eye, it's extremely poor. Because of me saying we had only noticed the squint 6-8 weeks ago she was very concerned, we are going away at the end of the week and when she suggested an appointment and I mentioned us going away she said no this needs to be done urgently. We were able to get an appointment for Thursday morning, where they will do a health test on the eye, she also asked if I had noticed any glares on photos or anything which I haven't. Anyway I'm not a mess thinking she must have some sort of tumour impacting her vision. I've looked back at pictures and I'm able to see her eyes squinted slightly over a year ago so it isn't as sudden as it seems, she is also developing at a very good rate, hitting milestones, has no issues with drawing or catching a ball etc. She has been clumsy but that's not sudden that's how she's been since she can walk. I just I'm not even sure what I'm posting for I guess some reassurance and hand holding. I feel awful that she could have had really bad vision for as long as she's been born and I've only just picked it up. I just need some support and positivity !!

I had a squint surgically corrected when I was under 5. Decades ago, so things may have changed in how they are managed now. It was a small procedure - a muscle was tightened. Had to wear a patch for a few days after, and lots of eye tests and monitoring for a some time. Not caused by malignancy. No long term effects that I am aware of.
Try not to worry (easily said, I know) the professionals are on the case now.

I had a lazy eye that wasn't picked up until I was 5 or so. By that time the nerves hadn't developed properly (or something) and so it won't get any better. I have very limited vision in that eye and pretty much everything is blurry. That said, it has zero impact on my life. I mean, I probably couldn't join the army or something but I function perfectly normally otherwise. I'm not sure if that's reassuring or not but if it is something similar, it's really not a big deal.

Hiya my daughter also had a number of eye issues. By squint, do you mean it's turning in or out? My daughters eyes used to alternate between turning out and being straight. She had an op at 2 and a half and since then they have been straight about 95% of the time.

Hi the school test picked up DD lazy eye - she had very poor vision from it and we patched religiously every day for 2+hrs until she was 8or 9 and it stopped maki g a difference.
I can look back at pictures now and see the lazy eye we didn't notice.
Fingers crossed for you.

It’s encouraging that you can see the squint from further back. The problem you are referring to where there’s a glare in photos is extremely rare so try not to worry, you’ll be in on Thurs and squints of all sorts are very common and mostly very treatable.

I imagine they will give her eye drops that dilate the pupil to look in the back of the eye.... That's what they did with my daughter.

Perhaps you could try taking a pic of your daughter using a flash... Unless you think that will make you more nervous.

Probably because you said that you have only noticed it recently and it seems quite severe its concerned them... So it's good that you have managed to see that actually it's been going on a fair bit longer than you imagined.

With my daughter, her dad noticed it when she was 3 months old. I hadn't noticed.... It can be easy to miss when it's so slight. Have you anyone in your family with the issue? It often runs in families.

After the op my daughter was patched for a long time and it did improve her eyesight.... But not much. She also wears glasses, but it's a small prescription as her eyesight problem is in her brain rather than her eyes if that makes sense.

Don't scare yourself more by taking a flash photo. We went running to the optician when my DS had a white pupil in a photo one evening when he was about 3 - I was literally waiting on the doorstep when they arrived to open up the next morning. I started saying 'Please could you have a look at him urgently...?' and she interrupted me saying 'You've seen a white pupil in a photo.' She checked him out and he was absolutely fine, but she says it's very very common these days because of the brightness of digital camera flashes, she gets lots of people racing in in a panic and she has never once encountered a child with a tumour in the eye.

Hopefully your daughter's will just be a lazy eye that can be corrected. She's young still - mine wasn't picked up until I was 4 and patching helped it considerably, although it's still my weaker eye.

My dad has a lazy eye that was missed. He has no vision in that eye. But you really would t know. I'd forgotten all about it until I read this post.

Thank you everyone for your reassurance!@FindaPenny it turns in towards the corner of her eye, it's not massively noticeable i just picked it up one day whilst playing with her and then I looked at a recent photo I had taken and I saw it, I've only now thought to go back and look and the similar squint is present even on photos from when she wasn't even 1, so that is reassuring. She's also very good at telling us things like if she's unwell or doesn't like anything so I would assume if her vision suddenly become very bad or blurry she would have mentioned to me or dp that there was a problem that she couldn't see or something and she hasn't mentioned anything.

I'm abit reluctant to take a pic just because I'm prone to assuming the worst ( I take medication for my anxiety which is predominantly health related anxiety! Typical) so I think no matter what it showed I would still look at it negatively

Thankyou all for replying you have really helped to reassure me. I do have a family history my brother was born with a burst blood vessel in one eye and severely poor vision in both eyes that wasn't detected until he was 5 and he needed patches the works. The doctor also checked her pupils and said they were both fine so that was also reassuring! Just wish I could know now! Hate waiting! But again thank you for your replies it means the world !

My husband has a very lazy eye that was not corrected until adulthood. He could barely see out of it. Once corrected his eye perked right up and now he sees well out of it with glasses. I am telling you this to show that it can be corrected even as an adult at least in some cases.

for you though. It must be hugely stressful

@itsalwaysunny I apologise for suggesting the photo idea, it was really stupid. When my daughter had her eye issues it was hard not to become obsessed by it and I do still look at her eyes checking the straightness of them.... Sorry again.

That's sort of good news about your brother as it suggests that there could be a hereditary reason rather than anything else.

I think generally there is more info around concerning an inward turn as that is much more common, so I am sure they will have lots of experience.

@FindaPenny no don't apologise! I can see some would find it helpful and the doctor did ask me aswell so it can't always be unreliable I just know what I'm like and how I'd be obsessive 🤣 thanks again for the reassurance it's helping me lots!

@itsalwaysunny thanks for letting me off the hook🤣

After my daughter had her operation to straighten her eyes they found her eyesight was below driving standard. With patching we were able to bring it to driving standard.
After some time of patching they offered us eye drops that would blur her eye as this would work the same as patching, but would be effective all day....but this can only be used for six months.

At 18 months my daughter had botox injections on her eyes to relax the muscles and try to make the eyes work together. It wasn't effective for her... Lasted 6 weeks, but it sounds like your daughter might not have a serious turn, so could be an option in the future.

Sorry meant she hopefully doesn't have a strong turn.

I'm not going to tell you not to worry itsalwaysunny because I also have health anxiety and I know those words do nothing!

I can understand how worried you must be. I had 'your worst case scenario' as a child and have lived with the issue my whole life. My DC have also gone through the mill so I know an awful lot about it all. You must, must remember it's incredibly rare indeed so hang on to that fact.

An eye with a squint will very often show as a white reflex in flash photography (due to the eyes not lining up so to speak) so be mindful of that.

It's good that you're being seen so soon, less waiting which will just make you feel worse I'm sure.

Did the opticians/hospital dilute her eye with drops while they were looking?

Sit tight, everything will be OK

Thankyou everyone, she's currently sat with me in bed munching peppers and playing a game keeping me nice and distracted! Hopefully tomorrow goes quick and we can get the appointment over an done with!

@Bloggyjump no that's what they will be doing on Thursday as well as a dye to asses the whole general health of the eye, she did have a look at it though and said both pupils were fine.

The dilution of the eye is what will give you the reassurance. I'm surprised they didn't do this there and then, it's a very straight forward procedure. Hopefully the time passes quickly and they can put your mind to rest on Thursday

I suggest you take one of your photos that shows the squint was there earlier.

@wowfudge definitely! we have got together an album to show the optometrist on Thursday. I'm kicking myself I didn't think to look before this but in reality I just thought she had developed a squint due to bad vision and it was just a general eye examine to determine what prescription she would need, I think the fact her vision was so poor coupled with my information about it being 6 weeks from when we noticed made the doctor more urgent which I completely understand and I'm grateful for, hindsight eh! I've also just learned DP sister also had to go to a and e when she was 3 due to her left eye and it was a similar case to my brother, she needed glasses and a patch etc, so it seems fairly common, especially amongst my family! Just feeling so guilty that we didn't notice it earlier but again she's never complained never shown signs of any struggle and he squint is very subtle so it's easily missed! Typical mum guilt I guess! X

How did you get on @itsalwaysunny?

How was the appointment op.

Hi everyone sorry I haven't updated! We have the worst few days, yesterday was the worst I've ever had. We went to the appointment at 9 and they examined her and then the optometrist said she needed a second opinion from a senior eye doctor, so another doctor came and said her optic nerves were both raised and her pupil in her left eye wasn't dilating properly, they they said they were very concerned that there was something putting pressure on them so she needed to be admitted straight away and sent for a CT scan. So we went over to the paediatrics department this was at 11am and we were examined again by a consultant who do a lot of neurological tests on her which were all fine they had no concerns there and were told we had to wait till 3 for the scan which was horrific I never want to relive that in my life. Go for the scan she was incredible she stayed absolutely frozen still for it and even got some presents from the staff because of how good she was bless her, she's only 2! So then we came back and waited 2 more hours until finally we were told the CT scan was clear completely fine and that we were allowed to go home had to come back today for an mri which she had to be sedated for. We went in today and were told after a few hours that the mri wasn't happening however we saw another consultant who had another look at her eye and was quite happy that her pupils were fine and that as the ct scan was clear the mri wasn't urgent and it would be arranged for about 4 weeks time, we then had to go back to optometrists for another eye exam with an Children’s eye specialist and an exam to determine her prescription. Well don't I wish we would have just seen her first she was incredible and just said her nerves were raised due to the squint and effort she was putting on her eyes to strain and see properly. She has very poor vision in her left eye and her right eye is abit bad nothing like the left. She has a script for glasses, will have patches and eventually potentially surgery to correct her squint but she said we didn't have to have the mri as she was happy the ct was clear and new the reason behind the optic nerves being raised!!!

So sorry for the essay! But I am over the moon been to hell and back the last 48 hours, thought we were going to be told the worst about our baby girl but thankfull its all okay! Now to pack for our holiday which we can still make!!

Thankyou to each and everyone of you, I was very low the last few days and reading you reaching out and offering a supportive ear has meant the world! Thankyou so very much !

You could be writing about my son - same age, noticed suddenly but when talking to others a few family members said they thought they'd noticed before but it wasn't as pronounced. He had no vision in the right eye as his brain got sick of trying to interpret 2 conflicting signals and turned it off! He patched for a few years for various lengths of time and has a strong prescription but he's now 7 and we only notice the lazy eye when he's tired. Try not to think the worst (although I also panicked at first)!