Mom with children who have hemangiomas?

Melissa - posted on 03/26/2010 ( 13 moms have responded )

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My son suffers from multiple hemangiomas,we're debating surgery.Just wondering if any one has been through these problems before,need advice!

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Christel - posted on 06/11/2011

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My 3 month Sydney who was born 8 weeks early started to get a small red dot on her neck while she was in the NICU. Her doctor monitored it and referred me to a cardiologist and a dermatologist who work together on treating hemangiomas. They are treating her with a BP med Propranolol. In the beginning they monitor her in the hospital to make sure she could handle the meds without being harmed. It works in stages, the first causing the hemangioma to stop growing then lose color and last shrinkage. It sounds to good to be true but Sydney's has stopped growing and has changed color after being on meds for 4 weeks! Search it online because my doctor said it doesn't work for all and is more efficient during the first 2 months of diagnoses. If it doesn't completely go away I am considering on having it removed. I hope everyone finds a plan that suits the interest of their baby. Let me know if you need more info..

Jennifer - posted on 04/02/2010

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My 12 month old daughter has two. One is on the left side of her face close to her earlobe and the other is on her stomach. The one on her stomach is almost gone and the one on her face has stayed the same size for the past 6 months or so. Her pediatrician keeps an eye on it but assures me it should go away! I hope so for her sake as she gets older! I hope you find the answers you are looking for and if not satisfied with the first doctor's answer, PLEASE go for a second opinion!!! :)

Shirley - posted on 03/31/2010

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My daughter is 40 now and had a large hemangioma on her lower eye lid as a baby. It required 7 surgeries to remove it all. They will eventually go away on their own if they are not in an area that is effected in a negative way. For my daughter there were visual concerns. Unfortunatly we were not able to avoid a loss of vision in that eye. I do not regret the surgeries and would make the same choice today.

Heather - posted on 03/28/2010

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My neice had several as a baby(one on her eyelid that brought on a lot of staring and questions) and they got larger until she was a toddler and then slowly started going away. She is now 11 and has nothing at all no matter how hard you look. Hers were not as large as your sons. The small hole sounds very concerning, I hope you get answers.

Trish - posted on 03/26/2010

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Hi Melissa re website have u goggled the name on the net to see what cames up and the look through the different searchs to find a site that is of help.

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Melissa - posted on 04/01/2010

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Thank you for your response.Vicki where you said your niece had hers my son has one in that exact spot and one on the lower part of his arm between his elbow and wrist.They are doing that same thing,monitoring how big it gets.Last yr was our last MRI and they said the one his arms seem to be ok for now as it is not affecting the nerves.We are going for more MRI's in June,so we'll see where we are after that!!

Elizabeth - posted on 04/01/2010

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my son 5 mo has one on the left side of his neck. The dr is monitoring it since it has gotten larger (about 1-2 cm).It doesnt bother him at all. They tell me it may go away on its own, but since it is on his neck right at the collar line we are considering having it removed. The dr has referred us to a dermatologist for follow up.

Vicki - posted on 04/01/2010

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My (step) niece had one on the top of her arm, toward the bend of her elbow. The doctor monitored it each year and measured the size. Her's actually grew larger with age. It grew to be a little larger than a golf ball but smaller than a tennis ball (if that helps). Her mother finally decided to have it surgically removed when she was 7 or 8 because my niece began to become self conscious about it. The doctor also said that because of where her's was located, it could impede her nerve growth. So for her, it was necessary. I do pray that God gives you wisdom on what is best for your son. It's never an easy decision for a parent who is faced with electing for their child to have surgery.

Angie - posted on 03/30/2010

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Go with what your doctor recommends. The orange sized hemangioma that covers the hole in his skull sounds particularly concerning. If they can effectively fix the hole, I'd go for it.

Melissa - posted on 03/26/2010

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Thank you for reading about my issue with my son.It's kinda crazy you say that they told u that they will or did go away,they also told me the same thing at his ped,and CHEO.I really want to believe it,except as he's grown older the one on his head has grown to the size of a small orange.He also has another on his right temple area,one on his back right side and 2 on his arm.Which they talking biopsi,but left it because they said it was looking fine for now ,but will follow up.The one on his head is most concerning due to the fact he has a small hole in his skull,underneath this hemangioma .So needless to say this is a major descision,if u know of any web sites or anyone with info I would like to hear from u.Thanks for listening.

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my son has one now on his back right side. his dr said that it's nothing to worry about unless it starts bleeding or gets bigger. she said it should go away by the time he is 1 or 2. it doesn't bother him @ all. hope this helps some. good luck!

Joan - posted on 03/26/2010

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hi

my son had two when he was young. they were never large enough to consider surgery. i don't think it would have even been an option then. as he got older they did get smaller and then went away.i wish you the best of luck.

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