Hemangioma on the back of the head bleeding..

synthesis2 · #1 08-17-2008, 04:25 PM

Hello I'm new to this board so I tried to read as much as possible but I have not come accross this one yet. My wife and I have a newborn who was born 1 pound 6 ounces and has made it, now he is 6 pounds 9 ounces and is 4 months old. He has a little Hemangioma on the back of his head...( Right in the middle) and the dotors said they don't hurt.

Yet anytime he puts his head directly back on it he screams like crazy.... It also bleeds many times. The doctors at the NICU said it just goes away after a couple of years but we just don't like watching him scream and bleed all the time. Any sugestions?????

Thank you so much...

cherie · #2 08-17-2008, 05:19 PM

Hi! I am so sorry that your son is suffering. Your best bet is to take him to a vascular anomalies clinic. From experience, most pediatricians prefer the wait and see method. Unfortunately so do some VAC's. But if it is bleeding and he is in pain, the doctors at a VAC would be more likely to do something than a pediatrician would. I don't know where you live but there are VAC's in several places. A few I have heard of are in New Orleans, Arkansas, Texas (Dallas and Houston), New York, Boston, California. There are probably some other places, but these are all I can think of right now.
Good luck and God Bless!
Cherie

synthesis2 · #3 08-18-2008, 02:24 AM

Thank you for your response, we only have one in our area, I hope she does something to help, it just breaks our hearts everytime he screams...

jgoodman0814 · #4 08-18-2008, 02:30 PM

I am so sorry that your son and you all are going through that. I know its hard! Im not sure where you all live, but there are a ton of places that would be good for your son. along with the ones listed above, there is one in cincinnati at childrens, lexington ky has a pediatric hematologist that is wonderful too. i heard that sc has a place and maybe even ga. there is one in tn too. My suggestion would be to take him to a pediatric hemotologist if you can find one. not a dermatologist.

synthesis2 · #5 08-19-2008, 06:22 AM

Thanks for the responses, I do have a question for anyone out there with a child with a hemangioma. All of our NICU doctors said they are not painful yet whenever you just slightly touch it, he absolutly goes crazy in pain. The doctors just dismissed it, so when we see VA doctor, can we insist on surgery and if so does insurance cover it or is it all out of pocket, not that it matters but just curious.

AubrieB · #6 08-19-2008, 10:34 AM

Quote:

Originally Posted by synthesis2

Thanks for the responses, I do have a question for anyone out there with a child with a hemangioma. All of our NICU doctors said they are not painful yet whenever you just slightly touch it, he absolutly goes crazy in pain. The doctors just dismissed it, so when we see VA doctor, can we insist on surgery and if so does insurance cover it or is it all out of pocket, not that it matters but just curious.

My sons hemangioma wasn't painful until it ulcerated and even then we were told by a plastic surgeon to just put neosporin on it. When we finally got our insurance squared away, and yes they are paying for ALL of it, but with alot of not taking "no" for an answer by us, the Drs wanted to laser the hemangioma to help the ulceration heal. Then take it off when it stops growing. He has his surgery Oct 21st. He will be about a year old.

synthesis2 · #7 08-19-2008, 06:45 PM

So did you just insist to the doctor that you wanted surgery vs. the laser treatment?

AubrieB · #8 08-19-2008, 11:35 PM

Quote:

Originally Posted by synthesis2

So did you just insist to the doctor that you wanted surgery vs. the laser treatment?

I told her that my husband and I were leaning more towards surgery and she actually agreed with us. If his hemangioma did go away on its own, there would still be saggy skin left. It would have to be removed later when he was older. She thought it would be better to remove it when he was younger when it stops growing. The laser was to help heal the ulceration and make the skin healthier for when she does the surgery.

synthesis2 · #9 08-20-2008, 03:30 AM

Thank you, I cannot begin to tell you how much all of the advice means to my wife and I. We met with our Ped doctor today and she referred us to a Vas Abnor. spec. and we are going to talk to her about surgery. Hopefully we can get something to happen.. I will keep you posted and may ask a question or two more thru the process. Thanks...

jgoodman0814 · #10 08-20-2008, 07:04 PM

check out my daughters story on this site. this may answer a few of your questions. www.caringbridge.org/visit/avaball
as far as it hurting. it usually only hurts when ulcerated, however...all they know is that it might hurt when you touch it so its a natural reaction to cry even when its not ulcerated. my daughter is 14 months old, had her hemangioma removed at 12 months, and still to this day wont let anyone touch her arm. as far as the insurance, most will pay if its considered "conginital" or "born with it." i hope this helps. Ava's story is a little long, but there is a lot of good info, and there are also photos.