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Hemangiomas Lock Rss

My little girl has one on her eyelid which has been growing. Anyone have any experience with these? I'm seeing a specialist at the Sydney Childrens Hospital and hoping to get in sooner rather than later.

Quite distressing to see this growth on my babys eyelid.
My son has 3 hemangioma's but none on his eyelids. We are also going to the Sydney Childrens Hospital. As your little girls hemangioma is on her eyelid I would try to get in asap as hemangiomas on or near the eye can cause serious problems. Are you able to contact the hospital and speak with someone from the Vascular Birthmark Clinic as they may get you in earlier rather than later due to the location of your babies hemangioma. You can also google Vascular Birthmark Foundation they have great information, people you can contact plus a forum as well.

All the best smile

DS has one on his back, but it grew briefly after birth but never got bigger than about 4 mm. We were lucky.
My GP was great and followed up the specialist for me. Going in next week even though they are heavily booked. So glad its moving quickly.

Will let you know what happens next
Hi Sab2012,

Have you been to your appointment with your daughter yet. Hoping things are going well for you.

Cheers smile

Yes i have! The Dr said it was urgent so they got us in the next day to start on the meds. It was a long day at the hospital and we're back there again tomorrow but very happy. The partially formed one on her legnhas already started changing!

She's got to take the meds for a year with regular check ups from the eye dr but very pleased. The staff at the childrens hospital have been great so far.
That's great news!

You must be so relieved that your little one is getting treatment as I know how stressful this all can be. These things can grow and change so quickly.

My boy is having a tough time of late in addition to the hemangiomas on my little guys skin he may also have hemangiomas growing in his intestinals so he will have to have a colonoscopy next week which involves him being put under anesetic (sp?) which is scary for such a young baby.

So sorry to hear that....hopefully there's nothing growing there. Poor thing...they handle it better than we do I think though. My little one slept through everything last week.

Who are you seeing at the children's hospital?
Hi Sab2012,

I would like to know how is your daughter doing with the treatment....what type of treatment they gave her? And who is her doctor at Sydney Children's Hospital?
Hey my daughter has one on her jawline. Hers is all under the skin so looks like a big bruise. We too are seeing a specialist at the childrens. Apparently there is a medicine they can use now to treat them (starts with a p). Hoping dd doesn't need surgery so young.
Goodluck! Would you be able to tell me how you go? I haven't received my referral letter yet so probably won't get in for a few weeks.

RKBE that's awful. Hope he doesn't have any internally. I was told when there are several externally they check for them internally.
Fyi I was told to see a Dr McCann (not sure how to spell?) She specialises in hemangiomas. Who is everyone else seeing?

Treatment is going well. We are using propranolol and will be on it for a year. It has definitely reduced in size but hasn't gone away.

We see Prof Wargon. No issues so far so we'll continue as is. FYI They'll only give meds if they think it'll cause a problem otherwise they will leave as is

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