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Absent red reflex

70 replies

Abs0luti0n · 16/01/2022 21:55

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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Poorenough · 19/01/2022 11:26

Best of luck, let us know how you get on Flowers

Rodders92 · 19/01/2022 12:47

Sorry to see your update, it’s horrible to have this hanging over you

DuneFan · 19/01/2022 12:54

My ds had a cataract identified at birth. There is a well established treatment pathway for it,the earlier it is started the better so great it has been identified now

My ds is 3 and can now read the top two lines on the opticians chart with his cataract eye. His other eye has perfect vision.

I recommend the Facebook group Children with Congenital Cataracts if you use Facebook. You'll find hundreds of stories like yours and lots of great outcomes.

DuneFan · 19/01/2022 12:57

And Flowers

Waiting for diagnosis was our worst moment

Abs0luti0n · 19/01/2022 17:51

@DuneFan

My ds had a cataract identified at birth. There is a well established treatment pathway for it,the earlier it is started the better so great it has been identified now

My ds is 3 and can now read the top two lines on the opticians chart with his cataract eye. His other eye has perfect vision.

I recommend the Facebook group Children with Congenital Cataracts if you use Facebook. You'll find hundreds of stories like yours and lots of great outcomes.

Oh that's brilliant, I'm so pleased it went well for him! You are right that it's the waiting for diagnosis..... I'm jumping to all sorts of scenarios - cancerous tumours etc with removal of eye & worse..... I struggle massively with anxiety anyway so this is not helping! His hospital discharge at birth said his eyes were fine so I'm not sure what difference that makes..... or even if that was accurate as he hadn't opened his eyes so it can't have been easy to examine 😬
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Mama1980 · 19/01/2022 19:57

Best of luck op. I have no advice on this particular issue but I know how terrifying the wait to see a dr for a diagnosis is. Take care of yourselves. Thanks

DuneFan · 19/01/2022 19:58

Cataracts can develop over the first few weeks / months of life and aren't always present at birth. Good luck for your appointment tomorrow. I hope you get a quick diagnosis and treatment plan if it's needed.

Abs0luti0n · 19/01/2022 23:55

@Mama1980

Best of luck op. I have no advice on this particular issue but I know how terrifying the wait to see a dr for a diagnosis is. Take care of yourselves. Thanks
Thank you, I appreciate it - I'm sorry if you've been there too.
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Abs0luti0n · 19/01/2022 23:59

@DuneFan

Cataracts can develop over the first few weeks / months of life and aren't always present at birth. Good luck for your appointment tomorrow. I hope you get a quick diagnosis and treatment plan if it's needed.
Wouldn't I see a cloudy colour in his eye if it were cataracts? Thank you, it's on Friday.... I wish it were tomorrow!
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IHateCoronavirus · 20/01/2022 00:09

All the best op Flowers deep breaths. Hoping for the best outcome for you.

Abs0luti0n · 20/01/2022 06:46

@IHateCoronavirus

All the best op Flowers deep breaths. Hoping for the best outcome for you.
Thank you!
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Rodders92 · 20/01/2022 09:12

Op you wouldn’t necessarily see any cloudiness or whiteness to the pupil in a cataract although you may do if you look with a pen torch. Let’s hope you get a definitive answer tomorrow

DuneFan · 20/01/2022 09:17

I never saw the cataract in my ds eye although it was supposed to be very dense. I never looked with a torch though.

Abs0luti0n · 20/01/2022 09:24

Ahhh ok, thanks both - I've only ever seen them in dogs before! One more day to get through but not looking for to putting him under a general.

We haven't told anybody bar our parents in real life as we just can't face the questions and don't want to worry people until we know for sure what we are dealing with so thank you so much to everybody who has commented on this thread - it has really helped me.

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Doubleglouceater · 20/01/2022 09:30

Good luck with your appointment. We have been on the cataract journey and recommend that fb group. It’s not an easy journey (if it is cataracts) but it is doable and as pp have said, many children have good outcomes.

Abs0luti0n · 21/01/2022 11:19

Hi everybody, he has been diagnosed with a cataract, they are operating next week to remove the lens. In my relief that it wasn't anything worse I completely fogged over all the details but something to do with needing to wear a contact lens and training the brain to allow light through it. So relieved and thank you so much for all your best wishes. If anybody whose children have had cataracts would mind sharing their journey then I would love to hear your experiences.

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DuneFan · 21/01/2022 11:53

OK so very similar to us.

Ds had lens removed at 3 weeks. For 4 weeks he had drops 4x a day and once those were finished he was fitted with a contact lens. Initially we went into the hospital each time it fell out or needed replacing (monthly) but I soon got fed up with that and learned to insert and remove myself. I've never worn lenses but it is OK doing it. I won't say easy but OK.

To ensure vision develops in the cataract eye we patch (occlusion therapy) this started at 1 waking hour per day and increased to 6 hours per day eventually. Basically you stick the patch over the good eye and go about your daily business- at first they will probably sleep as soon as the patch goes on because they can't see and getting the 1 hour can be really frustrating but as vision develops this gets easier.

We have eye pressure eye health and vision checked at the hospital regularly, at first this was monthly and then after about a year reduced to once every 3 months.

Ds is now 3 and as I said previously is doing really well, can see the top two lines on the opticians eye chart and eye health is great. He does great with his patch on but we do take it off if he's doing physical activity e.g. soft play, football, as that's hard without some binocular vision.

Hospitals do differ, some use daily lenses or recommend daily removal, some patch more or less than we do, some use differing drops regimes.

Wishing you the best of luck. At 3 years out I am very chilled about all of this and my ds takes it in his stride, but I found it incredibly hard when we first found out.

As I said previously I would highly recommend the Facebook group which is brilliant and has saved my sanity many a time.

Poorenough · 21/01/2022 12:24

I'm glad it was nothing worse op, best of luck to you and your little one for the future Flowers

Gladioli23 · 21/01/2022 19:25

That still sounds stressful but you must be very relieved that it's nothing worse and that they saw you so fast.

Abs0luti0n · 21/01/2022 20:38

@DuneFan

OK so very similar to us.

Ds had lens removed at 3 weeks. For 4 weeks he had drops 4x a day and once those were finished he was fitted with a contact lens. Initially we went into the hospital each time it fell out or needed replacing (monthly) but I soon got fed up with that and learned to insert and remove myself. I've never worn lenses but it is OK doing it. I won't say easy but OK.

To ensure vision develops in the cataract eye we patch (occlusion therapy) this started at 1 waking hour per day and increased to 6 hours per day eventually. Basically you stick the patch over the good eye and go about your daily business- at first they will probably sleep as soon as the patch goes on because they can't see and getting the 1 hour can be really frustrating but as vision develops this gets easier.

We have eye pressure eye health and vision checked at the hospital regularly, at first this was monthly and then after about a year reduced to once every 3 months.

Ds is now 3 and as I said previously is doing really well, can see the top two lines on the opticians eye chart and eye health is great. He does great with his patch on but we do take it off if he's doing physical activity e.g. soft play, football, as that's hard without some binocular vision.

Hospitals do differ, some use daily lenses or recommend daily removal, some patch more or less than we do, some use differing drops regimes.

Wishing you the best of luck. At 3 years out I am very chilled about all of this and my ds takes it in his stride, but I found it incredibly hard when we first found out.

As I said previously I would highly recommend the Facebook group which is brilliant and has saved my sanity many a time.

Thank you so much for this, I found it really helpful and it makes me feel positive about the long road we have ahead. Just a quick question, does your son have to wear the patch every day for 6 hours even 3 years later? At what point do they stop having to wear one?

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Abs0luti0n · 21/01/2022 20:39

@Poorenough

I'm glad it was nothing worse op, best of luck to you and your little one for the future Flowers

Thank you so much for your kindness 😊

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Abs0luti0n · 21/01/2022 20:41

@Gladioli23

That still sounds stressful but you must be very relieved that it's nothing worse and that they saw you so fast.

Yes it's not the easy quick fix we were after (second to nothing being wrong obviously!) but I'm trying to focus on the positive in that hopefully he will have decent enough sight eventually that it won't really pose a problem and he will still be able to drive me as mad as my other child!

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DuneFan · 21/01/2022 21:06

Yes I expect we will patch 6 hours a day until he starts school, then probably 2-4 until he is at least 8 and maybe as old as 11 - out of school hours. It's just our routine, clean teeth, patch on, eat breakfast.

Our nursery helps out and there are other kids who attend nursery who patch for other reasons which really helps.

We have increased and decreased the hours for various reasons but its always been between 4 and 6 since he was 6 months old.

Abs0luti0n · 22/01/2022 13:16

@DuneFan

Yes I expect we will patch 6 hours a day until he starts school, then probably 2-4 until he is at least 8 and maybe as old as 11 - out of school hours. It's just our routine, clean teeth, patch on, eat breakfast.

Our nursery helps out and there are other kids who attend nursery who patch for other reasons which really helps.

We have increased and decreased the hours for various reasons but its always been between 4 and 6 since he was 6 months old.

Gosh I didn't realise it would be for so long - it really is a long road isn't it? 😏 Do you have to insert the contacts as well? That's the bit I'm dreading the most.... I do not like eyes one little bit!

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DuneFan · 22/01/2022 15:03

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!