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Original poster

someone please help- i think my dd may have eye tumour! white pupil on photos!

48 replies

slinkstar · 20/04/2007 10:07

Took photos last night of dd and every one shows one eye with a white pupil, looked on the internet and it can mean retinoblastoma. ANyway she is already referred to a eye clinic for that eye because she has a squint, her next appointment isn't till july!
i rang them and they couldn't move the appointment and so ive just had to leave a very garbled message to some secretary.
i just rang the dr too and booked her in later today. gp can't exactly do much though can they!
what else can i do, and does anyone know of this white spot thing happening and it being nothing at all??
what i mean is should i be this worried?

OP posts:

SlightlyMadSecret · 21/04/2007 23:34

Can you actually get a picture with her left eye straight on...or is it hard with the squint?

crimplene · 22/04/2007 11:48

slinkstar. Worth taking her to an optician or an eye A&E to be in the safe side - she should have a proper slit-lamp examination, but your GP's probably right.

I wouldn't worry about there being something there 'in the way' if your DD says she can't see anything with a patch on - if the patching for the amblyopia isn't working very well, the same would happen. It does need sorting out though and sooner than July would be better.

lissielou · 22/04/2007 11:55

my little brother had his eye removed through a retina blastoma when he was 2.5. in the photos that alerted my mum his pupil looked "glassy" please get it checked out by an optician. can your dd see when the other eye is covered?

if you want to CAT me you can. or you can email me if youd prefer!

edam · 22/04/2007 11:56

Did your GP explain why s/he thought it was OK? I'd be happy to accept their response if I knew that they had definitely excluded it by finding something that proves it isn't what you fear, IYSWIM... Gess's link worries me because it says cancer is the working diagnosis (although still rare) until proved otherwise i.e. you have to definitely exclude cancer before deciding it's anything different, because although cancer is very rare it's serious and fast to develop.

lissielou · 22/04/2007 12:02

exactly edam, this type in particular spreads v quickly, dont want to frighten you but lb's tumour was discounted initially by the optician!

jellybeans · 22/04/2007 13:49

Hi I went through this exact thing (but def still get it checked to be sure) and was terrified. DS has a squint also. I took him to the docs and he also saw a specialst to do with his squint and they looked behind the eye and all was fine. Hope that is the case with your little one too xxxx

electra · 22/04/2007 14:14

I hope it's all ok. In your shoes I would definitely get an appointment with an eye doctor and pay, if necessary. Sorry you have this worry xx

Tiggiwinkle · 22/04/2007 16:54

I would definitely get it checked by an eye specialist. GPs tend not to know too much about eyes-I get an eye condition which needs urgent treatment from time to time, and I was advised by the hospital not to bother going to a GP if I felt it coming on-they just do not usually have the specialist knowledge required.
Some hospitals have an eye casualty-St Thomas"s in London does, as does Moorfields. Perhaps you could find out where your nearest one is and take her there?

Original poster

slinkstar · 22/04/2007 23:39

I have an appointment tommorrow morning, the message i left for the professor got through to him in the end, he rang me directly this evening and said he thought it was probably just the light but thinks he should see me tommorrow to check it out. So i will be there by 9am and dd will have drops and be seen by the proffessor i think- ive never even met him before even though i have been attending his clinic for years.

Thats worrying lissieloe about your lb, what did your mum do about the optitian who missed the retinoblastoma?

another thing ive realised is that dd has been suffering headaches recently too, well shes had about 3 in about 2 months but they come on very suddenly and are very severe, she had one this evening which is why its fresh in my mind. Its making me more worried but its probably just dehydration or something. my mind is working overtime.
Anyway im pleased she will be seen tommorrow and fingers crossed we will be sitting in macd's by midday having our treat that we have after eye drops!

OP posts:

electra · 22/04/2007 23:44

I hope it goes well - good luck. Try not to worry

pindy · 23/04/2007 08:32

Good luck - I hope it all goes well and turns out to be just a trick of the light.

gess · 23/04/2007 08:55

Glad you are getting it checked out slinkstar. Good luck.

lissielou · 23/04/2007 09:08

good luck hun.

she made a complaint about her, but i was quite young at the time and i think they were too worried about db to take it further

Original poster

slinkstar · 23/04/2007 10:55

ALL FINE!!!!!!!
im so relieved, dd had drops and then the prof saw her and looked at the photos i had took and he said i was right to be worried. He then looked in her eyes and said all is fine!
he said its a light reflex, he said most of the time he has to give bad news when he sees this, so i am so relieved!
thank you everyone for being supportive
im pleased your lb is ok now lissielou.

we are even back earlier than i expected too, dd back at school and i even got her a subway to celebrate

OP posts:

NannyL · 23/04/2007 11:05

thank goodness for that!

glad its all ok in the end!

gess · 23/04/2007 12:02

oh phew- glad you were seen. Bet you can't stop smiling! Perhaps worth mentioning to your GP that he said that usually he has to give bad news following photos of the sort you have..... Would be awful if the GP did the same to someone else and they either didn't push or even woorse, have the same outcome as you.

electra · 23/04/2007 12:15

oh I'm so glad it's all ok

lucyellensmum · 23/04/2007 22:03

oh thank god slinkstar, i'm so relieved for you I looked at her pic and have been thinking about her all day today, such a lovely looking little girl, your son(?) is a bit lovely too Best Wishes xxx

SlightlyMadSecret · 23/04/2007 22:27

I agree with gess. I would mention to GP that the consultant was v worried about photo. The GP needs to be aware for future reference.

Glad is OK BTW.

brimfull · 23/04/2007 22:32

great news!

Original poster

slinkstar · 24/04/2007 13:53

thanks everyone
i'm so pleased its all worked out such stress i felt the other day like a sick feeling in my stomach thinking something was wrong with my baby (well not baby really at 7 but ya know)
yes i will mention it to dr when i see him again- although he was right nothing was wrong. I'm still glad the prof looked though as otherwise i would have still wondered.

OP posts:

crimplene · 24/04/2007 14:16

Fantastic news! I'm so pleased for you

honeybrown · 24/04/2007 14:21

Well done you for having this checked out so promptly. We are friends with a family who noticed the same thing on a photo and their son had a retinoblastoma. He has had some chemo and the tumour as they say is currently "sleeping" and not getting any bigger. They are awaiting news of what to do next .

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