Wow, it's been a LONG time! First baby had H excised, second baby born with large H!

[EJsMommy]

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?

[mperron]

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.

[EJsMommy]

Thank you!

I'm hoping to find some info out about this steroid... But everything I'm reading is quite vague

[smurph]

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

[EJsMommy]

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 =)

[missy]

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

[lizzyh]

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.