17 month old girl w/upper lip hemangioma - Vascular Birthmarks Foundation Forum
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Old 07-08-2014, 09:19 PM
ahcarroll ahcarroll is offline
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Default 17 month old girl w/upper lip hemangioma

My name is Ashley. Im the mother of Charlotte, a sweet, happy and beautiful 17 month old baby girl. Charlotte's hemangioma was slightly visable at birth. At first we thought her face was chapped or raw from nursing. At 5 weeks old Charlotte was admitted to our local hospital for RSV. We had a week long stay with constant oxygen. It was at that time we noticed the lip begin to change. We followed up with our amazing pediatrican who sent us to Wake Forest Baptisit Medical Center to see the pediatric plastic surgeon. Thats where she confirmed it was not a PWS but a hemangioma. She advised us to take the wait and see approach. Unfortunatly, that is what we did. It grew fast and continued to do so. We took her back around 10 month old and she advised us to have laser surgery. On Dec 6th we checked our precious baby into the hospital. She did wonderfully. But unfortunatly we never saw a difference. If anything, it has continued to thicken. Her lip is beginning to sag due to the weight of the hemangioma. The surgeon assured us we would see a difference by summer. Its July and we have seen no difference. We had a friend who has a PWS tell us about a dermotologist at Duke Medical who specializes in hemangiomas. Our appointment with him is in 2 weeks.
I guess I just wanted to share my story because I look at this site every day looking for an ounce of hope for my babygirl. I just want people to look at her without negative thoughts. Sometimes my husband and I feel so alone in dealing with this. Any advice, encouragement, stories, personal experience, etc you can share with me would be great.
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Old 07-09-2014, 01:10 AM
smurph smurph is offline
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Hi there! I just want to assure you that you are NOT alone in any way. My daughter also had an upper lip hemangioma. She in 9 now but I remember the stress from when she was a baby like it was yesterday!!!! It is so hard to know what to do. It's also hard to deal with the stares and questions all the time. Her hemangioma ulcerated when she was about 2 months old so she did receive treatment at a young age. She was on oral steroids for several months. But when she was 5 she had surgery to smooth out her lip and make it more symmetrical. Eventually she had laser (age 6 and age 8) to get rid of the remaining redness between her nose and lip. For some reason, I am having difficulty seeing your pictures. Maybe Missy can help you with that. Here's some photos of my daughter's lip hemangioma. It may be similar to your daughter's or not-every hemangioma seems to have a mind of its own. Regardless, I think it's great that you are going to get a second opinion if you are unsure of unhappy with where things are at right now. I know that my daughter's hemangioma continued to grow some after a year of age-especially because she had just come off of her meds, but around 15 months or so I think we started to see things turn around and go in the opposite direction. If you have any pictures that you could bring to your appt. I think that would be very helpful! You can also send an email to Dr. Levitin (go to Ask the Experts) and you can send him photos. He can give you his thoughts as well. He is one of the best in the field. So hopefully this might help a bit. Here's my daughter's photo album. Please let me know if you have trouble viewing it.

https://www.facebook.com/shannon.hoh...02383&t ype=3

Good luck at your appt. and keep in touch!
Shannon
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Old 07-09-2014, 07:20 PM
ahcarroll ahcarroll is offline
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Thanks so much Shannon. It is so nice to hear from someone that has gone thru this very thing. Your daughters pictures are the only hemangioma pics Ive seen that are close to Charlottes. She is a very beautiful little girl!! I know you are very proud. I would love to show you Charlottes photos. I thought I did it right? This forum stuff is brand new to me.
I have read that lip hemangiomas tend to be a lot slower at getting smaller. Is that true? Did your daughters sag from the weight as well?
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Old 07-10-2014, 01:31 AM
smurph smurph is offline
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Sometimes posting pictures on here is tricky for some reason. Let me see if I can get Missy to help. I'm not sure if her lip sagged from the weight of the hemangioma or that it was like lumpy because of where her ulceration was. But my daughter's was definitely a little droopy or off in some way until she had the surgery. I know lip hemangiomas can definitely be a little tricky. Just email your photos to
contact@birthmark.org

Shannon
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Old 07-10-2014, 02:45 AM
missy missy is offline
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Hi,

Yes, just email pictures to that email address and I'll be happy to add them to your post.

Missy
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Old 07-10-2014, 02:35 PM
ahcarroll ahcarroll is offline
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I just emailed them to you. Thank you so much for your help!! If I send them to Dr. Levitin will I have to do the same?
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Old 07-10-2014, 05:11 PM
missy missy is offline
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Here you are!

She sure is cute!

Missy
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Old 07-10-2014, 07:41 PM
ahcarroll ahcarroll is offline
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Thank you!!!
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Old 07-11-2014, 02:12 AM
smurph smurph is offline
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Oh my goodness-She is so adorable!! I see what you are saying about her hemangioma. Lips can be so tricky. Let us know how her appointment goes in a couple of weeks. Good luck and hope to hear from you soon!
Shannon
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Old 08-04-2014, 07:11 PM
ahcarroll ahcarroll is offline
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I just wanted to share some good news we received from our Dr visit at Duke Medical. Our new Dr, Dr. Claude Burton, was amazing! He knows his stuff! He was very informative and was ready to get down to business with treatment. He gave her a laser treatment on the spot and Charlotte began using Timeolol. Tomorrow is our 2 week follow up. Im hoping he is happy with the results. If not...he wants us to start using Hemangiol. I hear the side effects are tough with that. Please say a prayer for us. Thanks again for the support and for this site. It truly helps! <3
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