Please help - ulcerated H in diaper area - Vascular Birthmarks Foundation Forum
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  #1  
Old 04-29-2008, 12:58 PM
Caitlin's Mum Caitlin's Mum is offline
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Question Please help - ulcerated H in diaper area

Our daughter Caitlin was born with an H on her buttock cheek, which has grown very close to her anus over recent months. Three and a half months ago an ulcer developed and despite everything we've tried the ulceration continues to travel around the h and keeps growing with no sign of stopping. The ulcer almost doubled in size a fortnight ago and then two new ulcers appeared this past weekend....!

Most of what we've learnt about h's and ulceration has come from this forum - it has been comforting (for want of a better word) to know that
we're not the only ones to go through this.

We've been using Orabase and Zinc and Castor to protect things so far. We've also tried a 'butt paste recipe' that we found here without success.

If anyone has any new ideas on what we can do to help the healing process, reduce pain and protect the wounds from the general mess down there please let us know - things are getting desperate as teething and learning to walk are taking their toll!
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Old 04-29-2008, 03:36 PM
mmarrari mmarrari is offline
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Hi,
I am so sorry your family is going through this. Have you seen a specialist regarding the ulcerations? There are different options to help heal ulcers. I know of other cases where laser was very successful in healing ulcers. With our daughter that wasn't necessary but when a small ulcer appeared, we contacted a wound care specialist (Dr. Serena from this site). He referred us to someone local and they had lots of recommendations and suggestions to make it heal faster. There are special topical creams and dressings you can use. I am sorry I can't be of more help but I would try emailing a specialist from this site for some suggestions... Good luck!
Marina
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Old 04-29-2008, 08:56 PM
Caitlin's Mum Caitlin's Mum is offline
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Thanks for your suggestion. I sent details to Dr Serena on the weekend and am eagerly waiting for a reply... but at this stage we're willing to try almost anything!!

Our GP referred us to a derrmatologist who has referred us to a ped surgeon and no one so far seems to have any ideas on what to do about the ulceration. We took ideas from this forum to the dermatologist (who has been fantastic with our niece's pw), but they dismissed all of them, and decided that anything they would normally do wasn't a good idea at their clinic because her h is so vascular... I think they keep looking at it from a surgical rather than a wound healing point of view. We're okay with the h and understand what to expect regarding general growth and involution etc, but want to do something to minimise Caitlin's pain and risk of infection in the interim - we've had one infection so far since I returned to work a few weeks ago.
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Old 04-29-2008, 09:17 PM
nickbar nickbar is offline
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Let me know if you don't hear from Dr. Serena soon.
Also, you might want to look into laser treatment on the area. My son's ulcer as on his ear...but the only thing that healed it was laser. Now, sometimes laser is not recommended...it is something you need to discuss with a specialist. I'd be happy to look into opinions for you if you need help.

Corinne
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Old 04-29-2008, 11:34 PM
Caitlin's Mum Caitlin's Mum is offline
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Thanks Corinne!

I've been gathering any info I can find on laser treatment for ulcer healing to take to our surgeon on May 5th. I'm hoping that I may have heard from Dr Serena by then too. But it will have only been a week since I sent him our info and I recall something about a two week response time(?), so I'm being realistic with my expectations.

I've seen parents talk about mixed results with laser treatment, which makes us a bit nervous to put her through more pain for no gain...so any info that will help us make an informed decision would be much appreciated!!
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Old 05-06-2008, 05:29 AM
nickbar nickbar is offline
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Please email me and I can connect you wth a mother that went thru this and how the laser healed the ulcer.

Corinne
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Old 05-08-2008, 11:44 PM
Caitlin's Mum Caitlin's Mum is offline
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Thanks Corrine,

I'll email now....it looks like it will be a good converstaion to have.

So you all know, after 3.5 months of disappointment we had a fantasitc visit with the surgeon on Monday and they have referred us to a specialist in the North Island (we live in the South if you don't know NZ). Unfortunately he is out of the country but is going to see us on his first day back on the 19th. He's looked at photos we took on Monday and unless there are changes between now and then that don't make it a good option, he says he will likely treat with pulsed dye laser on the 20th. Fingers crossed the end of all Caitlin's troubles is near!!! YAY!!!!!!;D
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Old 05-09-2008, 04:21 PM
jgoodman0814 jgoodman0814 is offline
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our daughter has a large hemangioma on her right arm, and we went four months, trying to get something to ease the pain of a large ulcerations that ran across the bicep of her arm. tring different creams and ointments, and nothing working. after starting steroids, that one finally healed, but another ulceration popped up. we decided that after what we all went through with the last one, that we were not waiting on this one to heal. we took her to a different dr and he gave us a litacain ointment to help with the pain until laser was scheduled. what a blessing!!!! this is the best stuff i have ever seen. as soon as we put it on the ulceration, it didnt hurt her anymore and it was so much easier to put the antibiotics on. after a week of that, we finally did laser and it went really well. she is now 10 months old and no ulcerations since.
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Old 05-13-2008, 12:23 AM
Caitlin's Mum Caitlin's Mum is offline
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Thanks Jessica - I've repeatedly asked for a New Zealand equivalent and no one here was willing to prescribe it for Caitlin - but we do have the next best thing.

The good news is that we have been given a new protective cream and other products by the hospital to help us out until the appoinment next week and they've worked miracles in just three or four days. They are a cleanser, protective spray and cleanser used together.

We use:
1. smith&nephew Secura Moisturising Cleanser (spray on the skin and use a wet face cloth to clean the general area (we use it everywhere as a general cleanser front and back - but it is mainly there to remove a protective cream that won't wash off with soap and water). Once dry this is followed by...
2. 2 sprays of 3G brand Cavilon to the h and ulcer (a spray on protective layer that stops dressings and other things sticking to the skin and doing damage when you remove them, but also helps the cream stay on the skin better). Its fantastic for nappy/diaper rash too - we've used one spray to teh front as well and the nappy rash was gone within a day!! The first time we used Cavilon is was a small sponge like swab, but the spray is better if you can get it.
3. Last but not least is another smith&nephew product - Secura Protective cream.
This cream has oil of cloves in it, which has anesthetic and antiseptic properties. I've always been more inclined towards natural remedies so liked the look of this when I first saw it... more so now we've seen the pain relief results if nothing else.

It sounds like a lot, but used together they work well and it isn't any extra work compared to a regular nappy change.

Since using this there has been a huge improvement in the healing of the ulcers, she now has four smaller ulcers instead of two bigger ones, though we haven't noticed much of a change in their size in the last three or four days, and one of them is still bleeding frequently.

There are fewer or even no tears at changing time and we are now finding that Caitlin doesn't set off the alarm bells immediately after she wets or dirties her nappy, and we're getting to sleep through the night when she isn't teething of course...

I'd recommend this to anyone!!!

Hopefully things will be even better after our trip to the specialist next week.
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Old 05-13-2008, 11:21 AM
missy missy is offline
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Remember to keep us up to date!!

Who will she be seeing?

Missy
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