Wow, it's been a LONG time! First baby had H excised, second baby born with large H! - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment.
Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #1  
Old 06-16-2010, 02:25 AM
EJsMommy EJsMommy is offline
Member
 
Join Date: Mar 2008
Location: Travis AFB, Fairfield, CA
Posts: 37
Default Wow, it's been a LONG time! First baby had H excised, second baby born with large H!

Hi everyone, it's been a VERY (too long) time since I've been on here.

About 2 years ago, Dr's Waner and Levitin worked their magic on my Oldest daughter, Eva. She had a large Hemangioma on her face and now she is growing up, you can't even see the scar and days go by where i forget she even had it!

Eva Before surgery in NYC:


A week later:

2 Years Later (today)!:


As you can see, AMAZING results!!

Now fast forward to DD2:

Born 19 months apart, I had a second baby girl. Claire. She too, has a Hemangioma. This one is on her bottom, about the size of a half dollar, flat but puffy, and present from day 2 of birth. It has shown no complications, until now.

Claire's hemangioma is now Ulcerated, causing her immense pain. Here we go again! The battle begins. After much leaking of puss, blood, and goop from her ulcer, Dr's at the military hospital here in California say "it looks good" or "that's not bad". Easy for them to say, it's not their baby!



So I need some guidance. They prescribed a steroid that i'm not sure is so safe to use on an ugly ulcer that is causing my little one so much pain. For reference, the ulcer started the size of a pin-head, and is now the size of a nickel. It is getting deeper by the day, and has a foul odor. She has been prescribed with clobetasol propionate.(temovate). From what I'm reading, it's not supposed to be applied to a) children under 12 (dd is 1) and b) open sores. What gives?
__________________
Cristine

Last edited by EJsMommy : 06-16-2010 at 02:39 AM.
Reply With Quote
  #2  
Old 06-16-2010, 02:29 AM
mperron mperron is offline
Member
 
Join Date: Feb 2010
Posts: 65
Default

Congrats on your success with your daughter Eva. Sorry to hear about your youngest. Looks so painful. Perhaps you can contact Dr. Waner or Dr. Levitin again, they are so helpful.
Reply With Quote
  #3  
Old 06-16-2010, 02:43 AM
EJsMommy EJsMommy is offline
Member
 
Join Date: Mar 2008
Location: Travis AFB, Fairfield, CA
Posts: 37
Default

Thank you!

I'm hoping to find some info out about this steroid... But everything I'm reading is quite vague
__________________
Cristine
Reply With Quote
  #4  
Old 06-16-2010, 03:56 AM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 401
Default

Oh my goodness! That looks like it hurts so much. I bet the doctors wouldn't be saying "it looks good" or "that's not bad" if that was on their own bottom!!!!! Easy for them to say!!! I would definitely email Dr. Levitin or Dr. Waner, especially since you have already had experience with them. Isn't Dr. Levitin practicing in California now, I think? I don't know how that works with the military though.

We have had a similar experience with multiple children with hemangiomas. 3 out of 4 of my daughters have them. My 5 year old has one on her lip which ulcerated when she was a few weeks old...she had steroid treatment as an infant and surgery 2 weeks ago. One of my 16 month old twins has a pretty extensive one on her hand/wrist, but we didn't have to treat it. It's involuting nicely on its own. Her twin sister has a small strawberry hemangioma on her arm. Weird, huh?

Best of luck with your little one. There's nothing worse than seeing your child in pain. I hope she feels better soon.
shannon
Reply With Quote
  #5  
Old 06-16-2010, 04:00 AM
EJsMommy EJsMommy is offline
Member
 
Join Date: Mar 2008
Location: Travis AFB, Fairfield, CA
Posts: 37
Default

WOW! So many of your little ones had them, that's very interesting! I thought it was strange that both my girls had it too, considering I always read that it's rare!

Thank you for the kind words =)
__________________
Cristine
Reply With Quote
  #6  
Old 06-16-2010, 02:20 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,724
Default

Hi and welcome back!!

Write to Dr. Levitin through the ask the expert: http://birthmark.org/experts.php

He IS practicing in California now. My geography is really bad, so I'm not sure how close you are to Los Angeles, but that is where is new practice is. He's trying to take all kinds of insurance, so he might take tricare, but I'm not sure (you know how tricare is).

Take care,

Missy
Reply With Quote
  #7  
Old 06-18-2010, 09:03 PM
lizzyh lizzyh is offline
Member
 
Join Date: Feb 2010
Location: Wyoming
Posts: 44
Default

I'm so sorry your baby is in pain! My daughter Geneva (we call her Eva also) is 7 months old. She has a hemangioma on her left butt cheek that ulcerated for 3 months. She had laser therapy on the ulcer and we kept it covered with vaseline and mepilex (wound dressing that worked awesome). It was very slow to heal. You might want to ask about lidocaine for the pain. I love your girls names! My cousin just had a baby and named her Clare. My two daughters are Geneva and Katherine.
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump