Hemangioma diaper area - labia - ulcerated! - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-02-2013, 09:37 PM
MrSen MrSen is offline
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Default Hemangioma diaper area - labia - ulcerated!

Hi all,
I have been going through the posts here in the forum and wanted to get your advices as well.
Our daughter (2.5 months old) has H on her left fabia majora. As soon as the doctor saw it, she started propranolol treatment. Unfortunately ulceration has also started around the same time.
In order to help with ulceration pain pdl laser treatment was also started. We had been through 2 sessions of pdl and ulceration doesn't seem to get any better.
It is really painful when she pees. We all suffer seeing her in such pain.

Can anyone comment how to ease the pain at that area? What kind of bandage / cream can we use, which would help in keeping the urine away from the open ulcerated area?
Ulceration is exactly at those areas where two outer lips are touching hence placing anything there is quite tricky.
I would appreciate any advice from the community. This board has been extremely useful for understanding and learning about the situation.
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Old 12-03-2013, 02:31 AM
smurph smurph is offline
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Oh the poor baby! I am so sorry she is going through this. It must be so difficult. I would suggest sending a message to Dr. Levitin (go to Ask the Expert panel) to see if he might have any suggestions for such a sensitive area. I also thought that there was a wound care specialist on here-I will look into that...maybe they could be of some assistance to you as well. I have a friend whose daughter had something like this...I will talk with her to see if sh has any advice. Hang in there. Hopefully someone else will chime in here with some experiences to share as well.
Take care!
Shannon
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  #3  
Old 12-03-2013, 12:07 PM
MrSen MrSen is offline
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Thank you very much Shannon for the quick reply.

I will now send a message to Dr. Levitin as you suggested. Even if the knowledge of how to treat the hemangioma is there in the internet / forums, easing the pain from ulcerated hemangiomas is quite limited (especially in difficult areas as in our case).

I'm looking forward to getting more info from others in the community.

Thanks in advance for the help and once more I have to say how big a role these forums have in helping the parents that are going through this painful process with our little kids.
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Old 12-03-2013, 09:43 PM
smurph smurph is offline
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This forum was a lifesaver when we were going through it ourselves. 3 out of my 4 daughters have hemangiomas. One had medication, surgery and laser. The others resolved on their own. It was a difficult journey to find out information and make decisions. My daughter cried for months and months in pain from her ulcerated hemangioma on her lip so I really feel for you. I am still trying to look into this a bit more for you. Sometimes it takes a couple days to find out more info. Good luck with everything!
Shannon
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Old 12-04-2013, 08:30 PM
MrSen MrSen is offline
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Hi Shannon,
Thanks a lot. I can only imagine the painful journey you had to go through with your kids. At the moment we are just using Bepanthen and Aquaphor for our daughter.

We couldn't find anything better or more appropriate to use.
I will check this thread regularly for more comments.
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Old 12-09-2013, 02:23 PM
MrSen MrSen is offline
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Hi all,
Any help with this? We will have the 3rd PDL session during this week. Ulceration hasn't got any better and from time to time, we are also seeing slight bleeding at the area; which makes it even more painful for our daughter.
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Old 12-09-2013, 02:39 PM
missy missy is online now
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Aquaphor is what is usually recommended most often.

One other thing that I have heard for diaper area ulcerations is to go a portion of a day with no diaper... see if getting the ulceration dry will help. Those parents generally put the baby on top of a cloth diaper during play time and allow the child's diaper area to dry.

When is her treatment this week?

Missy
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Old 12-09-2013, 10:28 PM
MrSen MrSen is offline
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Hi Missy,

Thanks for the advice. Using Bepanthen / Aquaphor regularly. It has been helping a little bit, but down side is you need to put a lot of cream and make sure to add more regularly. It somehow helps for keeping the urine not burning the ulcerated area (at least for a while), but on the other hand what happens with "drying" the ulceration area? It always stays moist.

It might be a good idea to keep her without the diaper. We will definitely give it a go.

3rd PDL will be this Wednesday, so two days to go still.
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Old 12-11-2013, 01:42 AM
smurph smurph is offline
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Have you tried products with zinc oxide? That might be helpful. What has the doctor recommended (the one who has been doing the laser?

Shannon
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  #10  
Old 12-13-2013, 09:48 PM
MrSen MrSen is offline
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We have had 3rd PDL now. Doctors here (as well as Dr. Levitin) commented that there are signs of healing and we shall simply keep it clean to avoid any infections.
After PDL, there is of course the pain and area is quite sensitive (normally). We are hoping that by the next visit situation improves.
Next week we will have the next visit for 4th PDL.

Couple of times we let her be without the diaper and when she peed it didn't feel like it was painful to her. I'm starting to think whether diaper is somehow sticking or touching the area easier and causing discomfort and pain.

Coming to zinc oxide; we were quite hesitant to use it. It can provide a good barrier but too difficult to clean (wasn't sure whether it is ok to apply it constantly to the ulcerated area) We cannot touch the area at all. Before the PDL, nurse was cleaning the ulcerated area and it right away started bleeding.

I will keep this thread updated still. I want to also thank Missy & Shannon & Dr. Levitin for all the help. It is a painful process to go through this with a newborn; and it definitely gives a brief relief to get others comments and support to cope with this situation.
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