Looking for Information about Hemangiomas in mouth

Hemangioma
#1

Hi Gang,

Recently my brother and his wife took their 1 month old to the Dr’s for 1 month check-up and sure enough, he has a hemangioma in his mouth on his lower gum tissue, behind his teeth (but of couse he doesn’t have teeth yet.) I can’t imagine how big it will get or how it will interfer with his eating, teeth coming in, etc.

Go figure, I have two children with hemangiomas and now he does to. Not to get off the subject, but I’m sure it is in our genes somewhere down the line as for us being carriers, but to get back onto the subject.

I’m very familiar with a lot of info on hemangiomas on the face, belly, etc., but I have no knowledge about them in the mouth. Does anyone have any experience or helpful info. about them in the mouth or know anyone who is. I’d greatly appreciate to hear any advice/info. I know on birthmark.org, they really don’t have a specialist to talk to, just a link that would go to the Mass. University Hospital.

Thanks in advance,
Cristy

#2

My daughter doesn’t have one in her mouth, she has one in her throat, along with others on her skin. From what I can tell, the treatment options for internal hemangiomas are the same as external ones, except that some of the side effects can cause more problems. For example, laser treatment for my daughter is not a good option because the heat can damage her vocal cords and the scar tissue that forms can cause stenosis of the trachea. I’m not sure what the issues would be with the different treatments for you, but it took us a while to find a doctor that had dealt with our problem before and could discuss each of the options–luckily we have found a good ENT. But, there should be someone out there for you.

Carol

#3

Brian has it on his tongue (which has now caused lumps). He also has it on the back of his throat and from what the Doctor said him having it there has caused his sleep problems. He has already had him in for an MRI but we have to do that over again because my son could not hold still. He was in the machine for about 2 hours. We are going in 2 weeks and he will have a CAT Scan and another MRI which they will knock him out for so he does not move. Dr Siker also want him to see a friend of his, a specialist for Ears Nose & Throat. Brian is 15 years old. I noticed it when he was 2 days old in Hospital. He looked like he had a purple tongue. The nurse thought it was due to sucking but at his 2 week check up the Doctor knew what it was. He also has it on his cheek but it has faded over the years and you don’t even notice it. All these years I have taken him to different Doc and no one knew what to do they just kept telling me he needs his tonsils out but none of them would touch
him. I found Dr Siker when our family doc referred him to a specialist here in town and he just said HMM… and let me call a friend. He got back to me a couple weeks later and said his friend recommended someone so he called him and that friend said to call Dr Siker cause he would be able to help. The Doctor told me what they usually do for treatment and I worry. I guess he could loose his taste and sometimes you loose sensations. He said they may come back in a few months though. He will not be doing laser treatment. He will be injecting what is like pure alcohol into the vein and that is why he we need several surgerys. We will find out more in a couple of weeks after he gets all the test results back.

Michelle

carolg hemangioma-cpt5417@lists.careplace.com wrote:

#4

Wow, it sounds like you have a lot to deal with. I hope that everything goes well. It’s hard to find someone who knows how to treat hemangiomas. Good luck

#5

I am a believer as well that Hermangoimas are carried in the family. I have many members of the family that have them, only they were all harmless and went away as the children grew. It is only my daughter that I know of that got a bad one. She is 3 now and doing wonderful though. I also use to be a waitress and there was this family that would come in every sunday after church. They had this baby that I just adored, and one day I noticed a hermangioma on the baby’s leg and ask the mother if that is what it was. She said yes and said that they all had one, meaning her and her other daughters.

#6

The genetic basis of hemagnioma is not fully understood but it is very clear that there are trends in families. There is one study that was done at Duke Univeristy by a Dr. Doug Marchuk. He specfically looked for a gene and in fact isolated a gene in at least one family but this was the not found in most family samples. There is a lot of work being done on this matter at Vascular Anomalie Centers across the US. Dr. Dawn Siegel at Oregon State University is doing a large study. We hope to see some results soon.
Karla

#7

Thank you so much for the info! Keep me posted on any more info

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From: KHall hemangioma-cpt5417@lists.careplace.com

#8

I hope that all this advice and support is helping.