Page 3 | Absent red reflex

Abs0luti0n · 2022-01-16T21:55:23+00:00

I took my 9 week old for his 6-8 week check last week and the GP has referred to opthalmology for an absent red reflex in one eye. Has anybody had experience of this? My husband and I are going out of our minds with worry and heartbroken about what this could mean.

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Original poster

Abs0luti0n · 22/01/2022 16:56

@DuneFan

Our hospital were happy for us to pop on whenever we needed the contact changing and do it for me (although this was pre covid). However we live quite a distance away so each trip was taking about 3 hours, and we had some problems with fit so it was coming out weekly (this is unusual!) So I learnt to do it myself as it seemed easier in the long run. The hospital always act v impressed that I do insertion and removal so I am guessing most parents don't. (Or they think I need encouragement!)

I was really squeamish about eyes but find it OK to do. It not being my own eye helps!

Does that mean your son's doesn't need to be taken out every evening? From my reading I thought it had to be taken out for bed at night and for bath/showers/swimming etc? Well done you, I'm going to have to get over it haha!

OP posts:

Jellycatrabbit · 22/01/2022 18:54

Totally depends on the sort of lenses your hospital uses. Yes ours goes in for 30 days and that's it. In theory he should wear tight fitting goggles for swimming but he won't keep them on so i do remove for the pool. We were not advised to remove for bath - there is a small risk with that which i accept.

American doctors always seem to recommend daily removal, UK seems to vary.

DuneFan · 22/01/2022 18:55

Darn it . . . name change fail!

JaneDoe7 · 22/01/2022 19:10

It's great that they have caught it early and you have the op booked in soon - this will give you best visual outcome. I also recommend joining the Children with congenital cataracts FB group - loads of great support on there for people new to the whole thing (most people find it quite overwhelming at first!). There is also a UK only whatsapp group where we share Uk-specific info too. PM me if you want to be added.

Original poster

Abs0luti0n · 22/01/2022 19:48

@Jellycatrabbit

Totally depends on the sort of lenses your hospital uses. Yes ours goes in for 30 days and that's it. In theory he should wear tight fitting goggles for swimming but he won't keep them on so i do remove for the pool. We were not advised to remove for bath - there is a small risk with that which i accept.

American doctors always seem to recommend daily removal, UK seems to vary.

Ahhh I see.... I didn't realise there could be so much variation! I hope I can reach a place where I'm as in control and relaxed about it as you.... you are my inspiration right now!

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Original poster

Abs0luti0n · 22/01/2022 19:55

@JaneDoe7

It's great that they have caught it early and you have the op booked in soon - this will give you best visual outcome. I also recommend joining the Children with congenital cataracts FB group - loads of great support on there for people new to the whole thing (most people find it quite overwhelming at first!). There is also a UK only whatsapp group where we share Uk-specific info too. PM me if you want to be added.

Thank you! Unfortunately his 6-8 week check happened late due to Christmas and I can't help panicking that those couple of weeks will have made a difference and set him back 😢 I've joined the fb group & already learnt a lot so finding it very helpful. I have no idea how to PM (on the app if that makes a difference).

OP posts:

JaneDoe7 · 23/01/2022 07:58

@Abs0luti0n I sent you a PM so hopefully you can reply.

stirrupleathers · 23/01/2022 22:26

Hi there, my daughter who is now 16, was diagnosed with congenital cataracts at her 6 week check..picked up by the Dr.
It was a really scary time, but the drs are amazing. I'm in Leicestershire. We did have to learn how to out contact lenses in at just 9 weeks old, but I did it. My daughter can put her contacts in herself Boe.. thankfully ha ha

She had the cataracts removed along with her lens. So she has very bad vision, +26 + 27

If you need to ask questions, please message me..take care !!

Doubleglouceater · 25/01/2022 19:27

@Jellycatrabbit

Totally depends on the sort of lenses your hospital uses. Yes ours goes in for 30 days and that's it. In theory he should wear tight fitting goggles for swimming but he won't keep them on so i do remove for the pool. We were not advised to remove for bath - there is a small risk with that which i accept.

American doctors always seem to recommend daily removal, UK seems to vary.

Yes, the variation in advice is a pain. Ours are 30 day lenses but the hospital advised daily removal and we found that we are less likely to lose a lens if we remove them regularly.

Good luck OP and I wouldn’t worry about the slight delay n the checks taking place. It’s still been caught very early.

Original poster

Abs0luti0n · 25/01/2022 22:03

@stirrupleathers

Hi there, my daughter who is now 16, was diagnosed with congenital cataracts at her 6 week check..picked up by the Dr. It was a really scary time, but the drs are amazing. I'm in Leicestershire. We did have to learn how to out contact lenses in at just 9 weeks old, but I did it. My daughter can put her contacts in herself Boe.. thankfully ha ha

She had the cataracts removed along with her lens. So she has very bad vision, +26 + 27

If you need to ask questions, please message me..take care !!

I like your user name!

Thank you for sharing your experience. My little one has had a lensectomy this morning at 11 weeks. The surgeon said it went well and he's likely to live a completely normal life in terms of driving, sport, school etc. What I didn't think to ask is what does a "successful outcome" look like? Will he need glasses/contact lenses all his life because his vision in that eye will always be poor or is there a chance that he won't? When I first heard about a cataract operation I thought they get rid of the cataract and boom.... he would be able to see! I'm fast learning it's a lot more complex and on a case by case basis!

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Original poster

Abs0luti0n · 25/01/2022 22:06

Thank you so much for the reassurance! He's had the op today so I think the surgeon said we will start talking about lenses in 10 or so days. I'm very nervous.... I really despise anything to do with eyes!

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DuneFan · 25/01/2022 22:19

Great news that he's had the op and it's gone well.

He could have a lens implant (IOL) later on. This would give better vision and no need for bottletop glasses.

As I understand it though the removal of the natural lens takes away some of the mechanics needed to focus at varying distances so he would wear glasses over the top for near or far work . . . We are not at that stage yet so I haven't really looked into how this works.

DuneFan · 25/01/2022 22:20

Ps I don't mean to sound offensive about thick glasses- I wear them myself.

Original poster

Abs0luti0n · 26/01/2022 14:47

@DuneFan

Great news that he's had the op and it's gone well.

He could have a lens implant (IOL) later on. This would give better vision and no need for bottletop glasses.

As I understand it though the removal of the natural lens takes away some of the mechanics needed to focus at varying distances so he would wear glasses over the top for near or far work . . . We are not at that stage yet so I haven't really looked into how this works.

Ah yes that makes sense. I've got an appointment in 2 weeks to look at fitting a contact.... nervous already! Now to get through the million eye drops to our check up next week!

OP posts:

JaneDoe7 · 26/01/2022 15:25

@Abs0luti0n - Make a chart to keep track of the eye drops - it really helps, especially if you are tired!

Original poster

Abs0luti0n · 27/01/2022 20:15

[quote JaneDoe7]@Abs0luti0n - Make a chart to keep track of the eye drops - it really helps, especially if you are tired![/quote]

I'm a big fan of a spreadsheet so that's fine but oh my lord how did you guys cope with the 1 hourly drops? I'm dead on my feet already!

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JaneDoe7 · 28/01/2022 10:04

@Abs0luti0n the hourly drops were the hardest bit of the process - I went a bit mad with tiredness - hence the need for the chart.
But it gets easier - and I got better at doing them!
I remember stopping in the middle of a shopping center to administer several sets of drops, much to the bemusement of my fellow shoppers. It is now just a distant memory.

DuneFan · 28/01/2022 10:30

I don't remember hourly drops - either we didn't do them or i have blocked it from my memory! But I also don't think I left the house much at that point! I do have a vague memory of 4 hourly drops. That may have been a bit later.

I am using the app Medisafe for some other medication (unrelated to eyes) and its quite useful. Annoying but useful.

Original poster

Abs0luti0n · 28/01/2022 11:44

We are doing pretty well on the drops considering he is violently opposed to anyone going remotely near his eyes at the moment! It has become more of a drop them near his eye and smear across eyelashes gently with a clean finger! The hourly drops are fine in the day but night times are an absolute killer, particularly as I'm breastfeeding as well but fingers crossed it's going OK so far apart from the tiredness! I am bemused at the prospect of anybody getting lenses in him though, he's such a strong little thing and will fight like mad!

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JaneDoe7 · 28/01/2022 12:34

@Abs0luti0n If he is lying on his back you can drop in in the inner corner (by the nose) of the closed eye and the liquid sort of seeps in across the eyelash line.