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Detached retina in a 7 month old

6 replies

missmargot · 30/08/2014 17:40

DS (7 months) had a hospital appointment this morning after being referred by the GP back in May for a suspected squint. What we expected to be a fairly routine appointment turned out to be anything but- an ultrasound diagnosed a partially detached retina due to 'something' pressing on it. The consultant has referred us to Birmingham Children's Hospital who will see us next week and DS will be examined under general anaesthetic to fully diagnose the cause.

We have a history of sever visual impairment in my family so whilst a similar condition wouldn't be ideal I also know it isn't the end of the world. My real concern is what the 'something' is that has caused the detachment, especially some form of tumour or retinoblastoma, although it could also be a blood vessel. DS does sometimes have a slightly amber tint to his pupil but not the bright white glow in photos that I know is a symptom. Also, the doctor didn't ask about family history of retinoblastoma which I would have expected him to have done if he suspected it. I didn't ask at the time as I've only found this out via Google since coming home.

Does anyone have any experience of retinal detachment or any advice to keep me sane until our appointment next week?

OP posts:
Are your children’s vaccines up to date?
missmargot · 31/08/2014 10:44

Anyone, please?

OP posts:
thekingfisher · 31/08/2014 10:48

Hi Mismargot
I'm really sorry I have no experience of this but didn't want to read and run

This sounds like a scary time and perhaps google whilst desperately attractive may not be the best place to get info.

Are you able to call your consultant or send an email with your query about the retinoblastoma? Often if you speak with their secretary they are happy to pass on messages.

Other than that i'll give you a hand to hold and hope you get the answers you need asap

missmargot · 31/08/2014 10:57

Thank you for being so kind. I know I need to step away from google, I may even turn the internet off to avoid temptation. We should get a phone call tomorrow morning with an appointment for BCH so they aren't hanging around, thankfully.

OP posts:
thekingfisher · 01/09/2014 17:36

Hope you got your apt Miss

missmargot · 02/09/2014 17:40

We have, for next Monday. Thank you so much for asking.

OP posts:
TheStorySoFar · 04/09/2014 21:15

Good luck…I have an almost 7MO & really hope all is ok. No advice, but couldn't read & run. Agree that Google is a bad place sometimes & you should try to avoid it. XX

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