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View Topic "glaucoma in babies who have a port wine stain"

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Posted By: Jessrick123
Total Posts: 5
Joined Date: 5 Aug 2009
I'm really hoping someone will be able to help me or advise me or just put my mind at ease. My 15 week old gorgeous daughter was born with a port wine stain on the left side of her face which has given her glaucoma.

The drops were working at first and she has had some laser but now the opthomologist need to operate with firstly a goniotomy.

We saw the best specialist we could today to see which op he thought my daughter should have and basically he told us because of the pws this is the worse type of glaucoma to treat and that to be prepared that she will go blind.

I don't know what else to do to help her i've got the best i'm praying the operations work but it would be nice to hear other similar stories.

thanks
Posted : 5 Aug 2009
Posted By: calumleeds
Total Posts: 1
Joined Date: 5 Aug 2009
Hi jessrick, I've a 15 month old girl with PWS and glaucoma , [ reason I just registered], she didnt see her surgeon till she was 6 weeks old, by that time her right eye had increased in size due to the pressure, I'm led to believe early intervention is imperative., She has had 2 gnomyctopies [ probably wrong spelling ]and nmerous EUA's ,She has stable but high pressure now and just been referred to a consultant in Halifax for second opinion ,yesterday we found out she needs a more serious operation , we are going to have a 3rd opinion hopefully before commencing, the baby is now on 2 lots of drops ,plus 7 hours a day patching of her good eye , we've also tried a contact lens ,we've given up as putting it in was tantamount to torture, she's got glasses which some days she'll wear then some days flings them out of the pram then it takes 4 weeks to get a new pair [ looks well cute though in them]..........This is really upsetting me as We went through what your going through 15 months ago regarding the PWS, friends still find it hard to get there heads around that Her issues aren't going away after a few visits to hospital , we probably go hospital twice a month sometimes twice a week , we're going through a lot of anguish and soul searching regarding her PWS at the moment and want to reitterate that finding someone to talk to who's experience mirrors there own is a valuable gift......my heart really goes out to you and your family....Something I forgot to say is that my baby girl is totally georgous,very cheeky and a complete little devil at the moment , it just so happens that she's got some medical issues , she makes every one laugh and has a wicked sense of humour...Take care Calum and P.M me if you want to chat
Posted : 5 Aug 2009
Posted By: Jessrick123
Total Posts: 5
Joined Date: 5 Aug 2009
Hello Callumleeds

I've only just logged on and read your story, i'm so sorry to hear that you've had to go through what we have as it's just such a worry. Mia had a goniotomy in september and within 2 weeks there was a complication as where the drainage was made it started to drag the iris in luckily this was fixed. Mia had an eua in december and her pressure was low and the eye hadn't changed since july, she is still on drops we are going to see about taking her off them if the next eua is okay - but each time i just think the worse. You must have been annoyed that no one picked up on your daughters eye until 6 weeks! we was told that Mia would have problems when born. Mia has a vvery large left eye compared to her right which i'm very aware of so i'm sure others are too, i'm forever checking mia's eye for high pressure.

It is nice to speak to someone who understands exactly what you're going through. Your daughter sounds lovely! Mia is also a very smiley happy baby.

Have you decided to have laser treatment on your daughters pws? we are seeing mia's plastic surgeon at the bham childrens in february.
Posted : 5 Aug 2009

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