anyine have a child with a hemangioma you can't actually see in eye?

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dov said my little could have this...not sure he knew what he was talking about!

anyone????????

as in a hidden birth mark..inside eye???

DD has many haemangiomas knocking about her persons! Is the Doc saying it's IN the eye - or somewhere about it? Just that I wouldn't settle for that...get a second opinion. they rarely cause problems but they are usually taken seriously - if only for observation over the years.

We're under Great Ormond Street for dd...and on our first appointment we had to have her eyes checked out by opthalmologist. She's also had an MRI as there is a soft, fleshy lump above her eye...and that came back inconclusive...but nothing to worry about. Apparently it's quite rare for them to be buried and not visible with the red or reddy/blue tinge- they usually present as a big, fleshy birthmark.

Sorry, no actual experience of them in the eye though. Good luck

Has your child been referred to a specialist/ophthalmologist. I know someone whose child has poor vision because of haemangiomas in the head.

yes we were at an opthalmology dept at local hospital

just not happy with "oh we dont really know what it could be probably hemangioma inside eye making eyelid droop erratically"

seeing them again in two months but not sure at all as drops made his eye even worse

they did basic tests and so far eyesight seems okish but tests are very limited with a baby who cant speak

am not convinced at all

That must be worrying for you. No experience of hemangioma but dd was born with a dermoid cyst in one eye, partially across the iris, and they were able to assess her eyesight at 3 months so you can probably trust their opinion on that for now. When he is more verbal and pointing they can test differently to confirm. The drops cause the pupil to dilate so can lead to an overtiredness and exaggeration of a lazy eye afterwards.

That must be worrying for you. No experience of hemangioma but dd was born with a dermoid cyst in one eye, partially across the iris, and they were able to assess her eyesight at 3 months so you can probably trust their opinion on that for now. When he is more verbal and pointing they can test differently to confirm. The drops cause the pupil to dilate so can lead to an overtiredness and exaggeration of a lazy eye afterwards.

sorry internet went down.

Hi
My first DD had a massive haemangioma on the side of her face - i was told not to worry about it and that it would eventually just go by itself. At about 3 months old I relaised that her eyeball was bulging on that side. She was rushed off for CAT scans and the like and yes, it turned out that it was growing inside her skull at the back of her eye. If we hadn't caught it in time, they reckon her optic nerve could have been stretched so far that she'd have been permanently blind in that eye They put her on steroids for a few months which managed to stop it getting bigger. She's now 7 and it's all but gone now, just a few tiny thread veins that are being zapped by a laser.

How old is your baby? I know that haemangiomas tend to have growth spurts. I don't want to scare you but I think it's important that people realise how serious this can be if left untreated. I lost count of the number of HCPs who told me "oh don't worry about it, she'll be fine when she's older". Not one of them mentioned that any birth mark near the eyes, nose or mouth should be watched carefully and it makes my blood boil

Have stopped now!