Eye Cancer/Retinoblastoma-if this was a picture of your daughter,what would you do?

[Whooosh]

That's it really-am I being paranoid or should I get her checked?
Where and how if yes?

Was thinking of you and your DD at 3am this morning. Any news?

Just found this thread Whooosh. Hope your poor dd's op went well & that you've managed to get some answers. Am very at how hard a time you've had getting someone to check her out.

bump

Hope everything's OK, Whooosh?

Getting sligtly twitched by the silence. Hope all's well your end.

bump can see you online

Hi All-sorry for the silence but have been busy playing nurse Mum and not been on Mumsnet till yesterday and then only briefly.

Well the op went fine-usual horrid bits and she seemed to be recovering really well-however,over the weekend she developed a throat infection and really isn't very well.We now have anti-botics so hoping it all settles down.
What they didn't tel me before the op was she had to stay away from all groups and activities for 2 weeks to avoid infection so we are going a bit stir crazy

As for her eye,I took her to Dolland and Aicheson day before her op and they were pretty useless and didn't allay my fears at all.Bloke said he could see why I was worried but he didn't think there was anything to worry about.Had I noticed that when dd looks at something she glances sideways??
No I hadn't and doesn't that suggest a problem in itself? He really was useless and now I am probably more concerned than before.
With dd being so poorly,I feel it unfair to drag her to Moorefields just yet but I can't really see any other option.Surely and optician should be able to tell???????

Whooosh, what exactly did he do? Did he look with an ophthalmoscope or take a fundus photograph?

It wasn't an opthalmoscope and he didn't take a photo-he just looked at her through what looked like a smaller/simpler version of an opthalmoscope-I stupidly didn't ask.
I do feel like a crap Mum for not asking more or insisting on stuff but with the whole tonsil thing and other crap in life at the moment I didn't...

And did he know that it was retinoblastoma you were concerned about? Even with a small hand-held ophthalmoscope, he should have been able to rule it out.

Whooosh-Don't know if Moorfields is close to you or not, but many hospitals have an eye "casualty" attached to the a and e department. Your nearest one would be happy to look at your dd given your concerns, I am sure. Rgearding opticians, I dont think D and A offer as broad a range of tests as, for instance, Boots or Specsavers (or they did not when I last used them anyway).

When i had concerns about one of my dds pupils which had become larger than the other, my gp made an urgent referral to the eye department of local hospital where she was seen pretty quickly. I think gp is best route in. DD had to have MRI scan and see neurologist but all is ok.

Boco, did they say why one pupil was bigger, jusy physiological?

just

Don't knwo where in London you are,, but Queen Mary's in Sidcup has a walk in A&E for eyes.

My brother works at Moorfields and they are excellent.

If it's at all manageable Whooosh, I'd go with Moorfields.

They said she has Horners syndrome - and needed to do MRI to check for neuroblastoma. They found weird anomalies on her scan - her spinal column is enlarged - but no tumours thank god, so they say as she wasn't born with this, it just appeared, that it's some lesion to the nerve, but they think it's fine - she'll be seen every year to make sure, and Addenbrookes are still looking at the scan.

Horner's is always a bit of a worry but it's quite rare for it to be sinister. It can be as a result of a difficult delivery if the baby's neck gets pulled.

Yes they said that was the most common reason, but hers appeared just before her second birthday and i had lots of photos of her with equal pupils to prove it. It also came with sudden headaches. Still don't understand why and what it was all about.

Some people get Horners syndrome with cluster headaches. But it seems to be temporary i.e it disappears when the headache goes.

She's a mystery! Headaches happened every few days for a month then stopped, but pupils still different sizes.

agree with chipmonkey whoosh. even a cursory glance with an opthalmoscope should pick up pupil abnormality or retinal blastoma. He is probably wondering if she has an intermittent turn in her eye - ie something that could be present at time of photo being taken but not on day of eye test. Any intermittent turn would tend to be worse when you are run down so I think you would be spotting it for sure now dd is so poorly. If you're not reassured you should get further advice. I have to say that whatever hospital you go to you will probably have to wait for ages and if you go to a regular A&E rather you are quite likely to be seen by someone who doesn't know one end of an opthalmoscope from the other. All the best ophthalmologists are mon-fri 9 to 5 people so I would take her to Moorfields on a weekday if you can.
(sorry -long!)

I like it when people say "agree with chipmonkey". It usually means they have oodles of sense!

Just read this thread, my DD has a squint, her left eye goes all over the place and you can't tell what she's looking at, bless her, I told the Health visitor at her 9 month check and she refered her to the hospital opthalmologist, She's now almost 13 months and I still haven't got an appointment!

I feel for your friend whooosh, my son had Neuroblastoma, being a child on a cancer ward recieving chemo is just awful, the feeling of helplessness for the parent is unbearable, prayers for recovery.

I hope you get this sorted, I must add, it's good to be a 'paranoid parent', if I wasn't, my son would not have been diagnosed and I wouldn't have had those 5 precious years with him.

It's always best to get things checked, thats what doc's are there for!

Hope it's nothing.

Incidently, dd's eye is worse when she's tired, so I agree with heavy on that one, you could be noticing it more because she's run down with her tonsils, bless her.