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Original poster

Does anyone know anything about retinoblastoma?

53 replies

dandandan · 22/08/2008 19:25

OK having a major panic here.

My friend made me go to her house earlier and showed me some photos she had of my DS and her DD, my DS has bright white eyes in the photo whereas her DDs are red. She saw something on the news yesterday on retinoblastoma and was checking photos of her DD for it and saw that my DS had it.

He doesn't have it in every photo but he does in some, on different days with diferent cameras. If a child has retinoblastoma would it show up on every photo?????????????

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Original poster
dandandan · 22/08/2008 19:35

bump

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stickyj · 22/08/2008 19:37

Don't know anything but wanted you to know someone's here. People will help, just hang on and keep bumping

liath · 22/08/2008 19:40

It would probably show up on all photos and retinoblastoma is very rare and usually only on one side.

I'm sure your GP would be happy to have a quick peek in your ds's eyes to reassure you. Try not to panic (easily said I know..!).

Original poster
dandandan · 22/08/2008 19:43

Been to my GP today she said she will refer us but its a bank holiday weekend and I just need to know - I'm not the most patient person!

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tiggerlovestobounce · 22/08/2008 19:44

I think that your frien is over-reacting a bit to be checking pictures in the first place.

It isnt likely though. If it is both eyes then I think it is very highly unlikey, especially if you havent noticed any visual impairment.

A GP or optician will easily be able to put your mind at rest by looking in the eyes, but please dont panic.

tiggerlovestobounce · 22/08/2008 19:46

Did your GP look in the eyes?

If you cant wait for the referral to come through then you could probably book in with an optician tomorrow.

Original poster
dandandan · 22/08/2008 19:58

GP looked in his eyes but said she didn;t have the rigt equipment to rule it out. I'll go to an optician tomorrow.

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Original poster
dandandan · 22/08/2008 20:11

sorry - bumping again

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madcol · 22/08/2008 20:17

Retinoblastoma is very rare unless there is a genetic problem when it occurs typically in both eyes. The photo thing is not a very good indicator because it needs the flash/light to hit the eyes at the same angle so if you have slight squint for example you may look like you have one red and one white eye.

the eyes affected would never have the red reflex in any pictures
If worried quickly assess sight in both eyes separately and book an opticians

Original poster
dandandan · 22/08/2008 20:22

I just want to say thankyou to you all, mumsnet is unbeatable in times of crisis! I am feeling much better now although I will get him to an optician tomorrow. Keep you posted.....

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AvenaLife · 22/08/2008 20:29

Just wanted to say if no one has already that this can also be caused by the child looking into the flash when the picture is being take.

AvenaLife · 22/08/2008 20:30

The red eye I mean, not the retinoblastoma.

Original poster
dandandan · 23/08/2008 20:51

Spent the day at the eye hospital. The consultant couldn't see anything in his eyes but didn't see his whole eye so we will have to go back to see a paed opthalmologist next week hopefully. So we still dont know.

The doctor said that the white eye wouldn't necessarily show in every photo and they are concerned as to what is causing it in DS.

Still worrying.....

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madcol · 24/08/2008 09:52

Its still very very unlikely.

OracleInaCoracle · 24/08/2008 10:02

my little brother had his eye removed when he was 3 because he had a retinablastoma. it was picked up by a photo, but in every pic his eye looked liked water (thats the only way i can describe it) kind of transluscent. it is incredibley rare (we have to have ds's eye checked regularly because it is often genetic) and would involve sudden reduced vision in one eye, even blindness. please dont worry.

shhhh · 29/08/2008 14:06

bump for dandandan...how is your ds...any news.?

Original poster
dandandan · 01/09/2008 19:49

Still waiting for our appointment with the paed, I'm hoping its taking a while beacuse they think he's ok.

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shhhh · 01/09/2008 20:03

yeah, I guess that a delay could mean he's not "urgent"....ime (ds ill from birth BUT not related illness.) if it was major they would have done further investigations..
Fingers crossed and let us know....x

Original poster
dandandan · 10/09/2008 17:40

Finally got an apt through today - 6th November!!!!!!!!!!!!!!

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Klaw · 13/09/2008 21:24

my friend just had her six month ds diagnosed with intraocular retinoblastoma, She took him to gp on Monday and was at Birmingham by Friday! She's a mess!

I plan to help in the only way I can, which will be to fund raise probably, I don't know what the financial implications will be of travelling to two different hospitals for various treatment over the coming weeks/months. I don't know what benefits she will be entitled to, will she be able to get anything at all? she has 3 kids and dh works but they are not middle class, iyswim.

Have a look at www.retinoblastoma.net/whatisrb.html, It's an American based site but has useful info

Klaw · 13/09/2008 21:28

dandandan, if you are worried that that is too long to wait I'd get on the phone and insist on getting an earlier appointment, like NOW. As I don't know how aggressive these things can be, the sooner you get a proper diagnosis and treatment started the better

Sometimes you just have to camp on their doorstep!

Be bolshy and don't be fobbed off, this is YOUR child, fight!

Thinking of you and wishing you well through this.

chegirl · 13/09/2008 21:39

danandan

You must feel really worried and I am sure nothing I can say will change that but my daughter had dodgy blood tests one day and was in hospital starting chemo the next day.

I know the NHS is dreadful for some things but in MY experience for childhood cancer it is second to none and frightingly fast.

They dont hang about.

Hope you get this sorted but if you think its too long just keep banging on until you get seen.

Good luck.

chegirl · 13/09/2008 21:40

I dindnt mean to imply that your LO had cancer. I am sorry if my post read like that. What I was trying to say was that if they thought it was likely - wheels would be spinning.

lisad123 · 14/09/2008 16:48

I tried to CAT you but didnt work. We have simular thing here. SGK noticed a photo with white eye so tuesday off to dictors, followed by a call weds, a further appointment thursday and due to see specialist 22nd sept. We are going private to see specialist as i couldnt wait that long. Hope your results are good, but to be honest I would go back and stamp feet, and refuse to leave until they have re referred as urgent. Did GP look into LOs eyes and give you any idea? Another idea would be to ring local eye clinic and ask if there is anyway to speed it up.

Original poster
dandandan · 14/09/2008 19:59

lisad123, hope your apt goes well next week, let me know. How many photos have you got with white eyes?

I was feeling OK about it as the apt we have been given is so far off I thought it was nothing to worry about. Might see if I can get an earlier one now though.

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