Hemangioma Member Introductions

#8

We have a 16 month old daughter, Maya with an hemangioma on (in) her upper lip. She’s had it since about 3 months old. Nothing has really worked and so now we are awaiting a plastic surgeon appointment.

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#9

Hi! I am a Mom to a perfect-in-every-way 3 year old girl that has been dealing with internal and external hemangiomas (a total of 8) from the day she was born. It’s been a long road, but we are seeing light at the end of the tunnel. Just wanted to say…well…HI! :slight_smile:

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#10

Hello, I have two children who both have vascular hemangiomas (on face and body). I’ve been contacted by Children’s Hospital of Philly to do testing on both to do studies on it running in the genes, etc. But, I did not want to put both of my little ones through all that. So not only did I do Laser treatments for my son (who is 3), but I also did the wait and see approach for my daughter (who is 1). They are both doing well. I am here to learn more new things about this condition and also to help inform others of what I found out about it as well and conditions and treatments. Please feel free to ask me any questions about it or pics. I am happy to share and talk about it.

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#11

I have a daughter with a hemagioma on her fore head and I am looking for some one to talk to that has gone through a surgery for this. Please help

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#12

My daughter was born with several hemangiomas. She’s 2 now and is beautiful, but the first year of her life was rough. Just interested in seeing what other people have gone through, and how and if the hemangiomas went away as the Dr.'s keep telling me they will.

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#13

I was recently diagnosed with hemangioma brachialis

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#14

My husband and I have just adopted a 4 year old girl from Russia with what is considered to be a massive hemangioma that covers half of her face. I am just looking for thoughts, support, resourses and whatever else anyone can offer as she begins her treatment. Can’t offer much to anyone else at this point but hopefully, as time goes by, I will have more to offer.

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#15

Hi, my name is Nicole and I have a 6 month old daughter named Olivia with a hemangioma on the side of her nose. Dr. Blei in NYC is the doctor we have been seein for the hemangioma and she seems to believe that the hemangioma is out of the growth phase, but we now have to decide whether to just wait and see what happens next or start to think about surgery. My husband and I would like to get all the info. we can get and maybe chat with other people in the same situation so we can make the best decision for Olivia.

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#16

Son has hemangioma in the throat and on the tongue. Want to know about treatments.

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#17

I have hemangioma to the face I have had over 65 surgeries to the face and eye… i am in the 85%tile … it has gotten better over the years but I am now over the age of 21 and cant seem to have the 7 surgeries left…any one wants to talk let me know… love to hear from u

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#18

Hello, I am mommy to a beautiful little girl. She developed a cavernous hemangioma at about 1 month old. We had opted to IPL laser treatment and that helped her quite a bit. Her hemangioma is below her left eye and was obstructing her downward view. Since the laser treatments we are pleased to say it has diminished in size, and she has developed perfectly. She does still have a “bruised” appearence on the spot and it is still very noticable. My husband and I opted to let it take its course after the initial treatments. I am interested in learning of further courses of action or the next option we have. It has been very hard on us in dealing with other peoples opinions of how we handled this. I am hoping to connect with someone that knows my anguish over this. I am hoping to find other options also.

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#19

Hi, I’m Trinity’s mom. She was born with a light pink mark on the right side of her face. We were told not to worry about it that it would go away by the time she was 1. At 2 weeks old it began to grow. At 2 months old it sat on her shoulder and she couldn’t left her head up. She was being seen but not being treated correctly, we didn’t know and totally trusted her doctor. At 5 months we found the first sore on her cheek. The doctor told us that was a good thing, that the sore was eating the hermangioma and her face would be left. Again we trusted him. The sores bleed all the time 3 months later they began to eat her earlobe off. We decided to stop trusting the doctor and find her help. We took her to Texas Children Hospital in Houston. She was treated every Tuesday for a year, and now she is 3 years old and seen every 3 months. She is doing great. She has to go see plastic surgery team in 6months and at 4 years old they will start those surgeries. I’m very nervous and unsure about that and would love advice on that handle. But manly I’m hear to give other parents hope that I didn’t have. Trinity went through hell, but she is healthy and beautiful now.

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#20

i am Jacque from TX. I had a baby girl, Madilyn, three months ago. She was born with a small strawberry hemangioma on her left earlobe. Slowy it has been growing… My husband and i have discussed surgery, partly because it is in an obvious spot and also because lately she has been whinning when anything touches it. Which is a struggle changing her outfits! And it has been scabbing, only bleeding once in a blue moon and only for a few moments. But it has tiny white scabs on it for weeks on end. So that makes the whole thing stand out more. My mother said that i had a small strawberry hemangioma on the back of my neck and also on my right pinky. Neither are there now, but my mother said that they never bothered me at the lease and never bleed. So i am just wondering about yalls community, and what yall talk about.

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#21

I was diagnosed in 1999 with hemangioma on my liver ay yhe age of 43, just would like to know more about my condition as it comes available. I would like to connect with people who may have same symptoms now or have had in past.

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#22

I have a three month old daughter with a periocular capillary hemangioma. I am looking for support and other treatment options other than those offered by local doctors.

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#23

My Grand daughter had Hemangioma tumer on her face she is 7 weeks old, and it is rapid growing, we need to find help in learning about it and what can be done IN PLANE ENGLISH!

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#24

Hi!
My daughter, Jillian, has a strawberry hemangioma on the right side of her head, just behind her eye. I am looking for other parents of children with the same condition. Jillian is 8mos old and we think we are going to treat it with surgery w/ Dr Waner in NYC. Any advice/comments would be appreciated! Thanks!
-Marie

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#25

I have three wonderful children. My oldest and youngest have no problems. But my middle child, Trinity, has been fighting with a hermangioma since she was 2 weeks old. She is 3 now and we have been through countless doctors visits and many pokes and prodes. She just finished her 2 plastic surgery to fix the scared tissue on the right side of her face and rebuild her ear lobe. She is very shy and scared around people, but other then that a typical 3 year old.

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#26

hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.

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pinned #27
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