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How do you know if there's an internal hemangioma?

Posted by on Jun. 10, 2009 at 10:05 AM
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I might just be paranoid, but after our ped mentioned the hemangiomas can be a problem if they're on an internal organ it's become a real concern. She didn't seem to think there was a problem, but how would you know?

Our DS is 4 months old and has four of them. A very light one on the back of his head, two on his legs (one is more deep) and a bright red one on his scrotum. We're going to see a plastic surgeon soon just in case they become an issue. But now I'm thinking, "How do we know there's nothing on an internal organ?" I'm kind of freaking. Any thoughts or experiences you'd like to share?

Thanks,

Amy

by on Jun. 10, 2009 at 10:05 AM
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number1mom1804
by New Member on Jun. 13, 2009 at 10:39 PM

My son is 10 months old and was born with his entire left leg covered and his scrotum also.  Because the hemangioma is so wide spread the doctors wanted to make sure he doesn't have any internal hemangiomas.  We have been through MRIs, CT scans, all of that.  Ever since then I have been to every specialist you can think of because there were some things on the MRI that could possibly be hemangioma.  They are still unsure but suspect he has it on his brain, spine, liver, and behind his eyes.  Your telling me about freaking out!!!!  So far nothing has been confirmed but there is still alot that needs to be done.  As far as development he is a healthy bouncing baby boy.  But to some it all up, talk to your doctor and find out if a MRI is necessary.  It should give you an idea if there is anything to worry about.  You could be lucky and the MRI could come out clean and prove you had nothing to worry about....good luck!

mtamy
by New Member on Jun. 15, 2009 at 9:42 AM

Oh wow. Yes, you definitely win for the freak out factor. Do they just keep an eye on things? They should disappear in time, shouldn't they?

I'll talk to my ped again to see what she thinks. She also wanted us to build a relationship with a plastic surgeon in the area just in case they ulcertated. This way, she said, we would be able to get in right away if there was a medical issue. I'm more worried about internal possibilities, though. Take care and keep in touch.

Thanks,

Amy

number1mom1804
by New Member on Jun. 27, 2009 at 1:35 AM

Yeah I usually go in for a check up every month and if something seems different or wrong I take him to be seen.  The doctor said it goes away in 30% of children by age 3, 60% by 6, and 90% by 9.  So hopefully JW has good odds!  Its funny you should mention ulceration...my sons leg just started ulcerating in the past weeks and the fastest appointment the doc had is the 6th of July.  Totally sucks and I am way freaking out now!!!  I just hope that his insurance will cover the laser treatment to heal it.  When he was born and diagnosed my ped was saying that the earlier treament is done the more effective it is but his insurance only cover the treatment if it was medically needed.(you know not just cosmetic)  Hopefully this will be reason enough...I'm sure it will be.  Thanks for the concern and good luck for your sweet baby!

Amanda aka number1mom1804

mtamy
by New Member on Jul. 3, 2009 at 9:21 AM

Amanda,

Please keep me posted on how everything turns out with your appt. next week. I bet the wait is making you crazy. Does it hurt JW quite a bit? You're in my prayers.

Best,

Amy

HNKmom
by Member on Jul. 22, 2009 at 10:14 AM

In my opinion your child should have an MRI done to be sure.  Usually when there are three or more hemangiomas they do this.  My son only had one but he had other factors that caused worry so he had two MRI's done...one at 6 months and one at 18 months.

angiewilson75
by New Member on Jul. 23, 2009 at 8:54 AM
Other than having the necessary scans done, you won't know. My son had a hemangioma just below his voice box and on Fathers Day 2008 he was struggling to breathe and we had to call 911. His oxygen level was in the 7o%. Anyway, the ENT had a feeling that was what it could be and the nurses prepared us that he could possibly come out of surgery with a trach. Sure enough, that was it and was trached thru Oct. 2008. Scariest thing we ever went thru!!! Also, my son had no other hemangiomas anywhere on the outside or inside of his body. So, we never knew until he couldn't breathe anymore. If you are concerned in any way, push the docs to do more testing. Go with your gut and be demanding just to ease your mind.
MsAprilAnn
by on Jul. 23, 2009 at 2:57 PM

My son has been totally scanned inside and out. They put him to sleep and did lots of tests when he wa a baby.

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