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  #1  
Old 01-14-2008, 06:35 PM
Christin Christin is offline
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Join Date: Aug 2007
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Default Please help

Hi you all and a happy new year!!
I havenīt been writing so much for a while, feeling a bit down...

My daughter still has an ulcer. It has been over 7 months now.... :-( I donīt know what to do. We are changing her dressings, keeping it clean, she have had two penicillin treatments but it just wonīt heal. It seems like every time we take the old dressing away, some skin stucks to it. Then, thereīs a new ulcer. It also seems like there is not enough skin to cover the ulcer.
Any suggestions?

Unfortunately we have to have the dressings on, she is constantly itching the mark otherwise. It has bled a few times, quite much!

My other concern is the growth. The lesion grew a lot until she was about 4 months old. We donīt think it has grown since. BUT, I am constantly worried that it will. Does anyone have any statistics? Is there alsways a second growth-face? When in that case. We havenīt had any treatment.

We are seeing a lot of greying in the middle, and the whole lesion is softer, does "hang" a bit (it is compound) and is brighter. Not so angry red any more.

Please, any thoughts? This whole thing is really making me sad and down.

Take care!

Love/ Christin from Sweden
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  #2  
Old 01-14-2008, 09:33 PM
claire & eloise claire & eloise is offline
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Hi Christin

im so sorry you are feeling this way and that the H is still causing problems.. if you need to chat please feel free to email me..

when eloise's ulcerated we used something from the doctors called mepital which is a gauze dressing inpregnanted with a parrafin based substance along with some cream called Bactroban. we also found.that sometimes it would stick to the skin..so to help it not sticking we wet the dressing in warm water before we tookit off. which seemed to help .also try to air it if possible 1 in every 3 days as we found this to help even if it is just for a short while...

eloise is now 13 months old and we are seeing changes in her H it has not grown any bigger since coming off the steriods but it is changing shape and colour and seems to be shrinking..although it seems such i slow process..we are hopefully due to see a facial plastic surgen in a couple of months as they are hopefully looking to to interveen/surgery by the age of 2/2 and half..so we will just have to wait to see what they say.

i hope you and ebba are ok please email me if you need a chat i will help and support you in anyway i can.
ive put a photo on of eloise so you can see how her is looking now at 13 months
love claire and eloise
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  #3  
Old 01-14-2008, 10:50 PM
nickbar nickbar is offline
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See if you can locate dressings made with a Gortex material...it worked wonders with a burn my son had on his wrist. Here is a link so you might get an idea of what I am talking about http://orthotape.com/searchBase.asp?...g=fro msearch

I am sorry you are going thru this still...it is so hard! I would encourage you to talk to your doctor and see if there are other things you can be doing to help the wound. I would encourage you also to email "ask the expert" dr. Serena. He is an expert with wound healing.

Corinne
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  #4  
Old 01-18-2008, 02:40 PM
jgoodman0814 jgoodman0814 is offline
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my duaghter has a hemangioma that covers most of her right upper arm. we too had problems with it healing. it was ulcerated for about 4 months. seemed like dressing it every night made it worse since when we took the dressing off, like in your case would make more skin come off. finally talked to the hematologist and put her on an antibiotic cream to cover the ulcerations and a barrier cream to keep the rest of the h moisturized. even with this, caused more skin to come off when taking it off. we started to wet the dressing that seemed to help a little getting it off. letting it air for a few days or even just during the day leave it uncovered. starting steroids seemed to heal the ulcerations with in a few weeks. they are completley healed now and have stayed that way. we are now on our 6th week of oral steroids. we have talked to dr levitin here on this site and he suggested to laser the ulcerations if they didnt go away with the steroids. might want to contact him. i know its frustrating, but there is good help out there.
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  #5  
Old 02-06-2008, 06:21 PM
Christin Christin is offline
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Default Happy update :-)

Hi again and thank you for replying!

I have great news; the ulcer is healed!!! Her lesion is so fine and we are all SO glad! It is soft and not so warm.
It took 7 months, but now it is finally healed!! I can recommend "fucidin", an antibacterial ointment. That finally helped together with Mepitel covering. Quite much ointment on so the skin wonīt stick.

Claire; Iīm so glad to hear that Eloise is doing better too. She is so cute in her Santaoutfit :-)

Corinne, I still canīt write threads on msn.... donīt know whatīs wrong.

Have a nice evening!
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  #6  
Old 02-06-2008, 08:50 PM
nickbar nickbar is offline
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Email me your user name and let me check your status. Any details you can share with me on what happens when you try to post will be helpful for me to figure out what the problem might be.

So HAPPY to hear the ulcers have healed!

Corinne
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  #7  
Old 02-08-2008, 07:36 PM
claire & eloise claire & eloise is offline
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hi christin

thats great news..
im so happy that it has now healed..
cuddles to ebbaxx
take care and chats soon

claire & eloise
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