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  #1  
Old 08-20-2009, 09:08 PM
claire & eloise claire & eloise is offline
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Join Date: Apr 2007
Location: sunderland uk
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Smile Were back and just to give you an update

Hello all,
I havent been on for a while but thought I'd give you an update on Eloise and her hemangioma journey. Eloise is now 2yr 4mth and a very happy and active little girl. Her H seems to have shrunk a bit and seems more squidy( although i dont think it has changed much) We are still under the facial surgen and dermatologist in sunderland (uk). They are still wanting to wait and see but i wasnt happy about this as Eloise is now noticing shes different to other children (as she is at nursery) and is often saying to me "mummy hemy off santa take it off" which breaks my heart as you could imagine. But finally we have had a breakthrough! I was watching the local news when an story came on about at little girl who had a H and had been treated with a low dose cancer drug called Bleomcycin which made the hemagioma shrink.( A small dose is injected into H) So i looked it all up and did some thorough research including getting in contact with the mu whos daughter was featured and liked what i saw so we got a referal and went to see the consultant Mr tobian Muir. He was a very nice man he had time for us and explained everything and showed us photos of patients he had treated. With this we have decided to try this treatment. we have to see a lung specialist first which is on the 17th september and if this is all clear we can go ahead with treatment. I am so happy as it isnt a invasive treatment she will be put to sleep and then the injection takes 5 minutes and then we can go home. its not sure yet on how many treatments she may need or if it will work he has said it might not go completly but enough to be able to do surgery. but at least we can say we have tried.. I will keep you all updated on how the treatment goes. For further info go to the southtees webite ( middlesborough uk.)
Thanks for reading and will post some up to date piccys of my little madam!
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Old 08-20-2009, 11:48 PM
missy missy is offline
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whoa. excellent news!!

Please do post some photos, but THANK YOU for updating everyone. I really want to hear more about this treatment!

Missy
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Old 08-21-2009, 01:33 AM
agbaby agbaby is offline
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i have not come across this treatment and would be very much interested in hearing more about it.

the south tees website did not discuss which countries were using this treatment.
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Old 08-25-2009, 09:24 PM
claire & eloise claire & eloise is offline
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Hi thanks for reading and yes i will definately let you know how it goes and will post some piccy's. MR tobian Muir is origanally from south africa which is where he started this treatment he then moved to the uk and this is where he does the treatment. I havent seen or heard of it being offered anywhere else other than the uk (south tees)
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