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-   -   I'm new to hemangiomas and need advice (http://birthmark.org/board/showthread.php?t=5338)

mensell09 05-21-2011 01:05 AM

I'm new to hemangiomas and need advice
 
Hi,
My daughter was born Feb. 9, 2011 she came out with a big purple bump on her nose. I have been told it is a Hemangioma, I have seen two different ENTs and one told me it will go down, the other one told me it will grow. I don't know what to do I have never heard of Hemangioma before don't know how to treat it or what would be best for my daughter. She had Jaundice real bad when she was born and when I was reading the report on here it said that jaundice could be a sign that its in her liver. I was thinking about going to do a full body MRI because she also has problems eating and breathing. But all I know is what I have read on this site so if anyone could give me advice I would be really grateful.

missy 05-21-2011 01:23 PM

If you've been given two different conflicting opinions, you should see a specialist. Whether they will determine that she needs and MRI, I don't know. But do not forget to mention her jaundice and problems eating and breathing.

Go here http://birthmark.org/node/55 to see if there is a doctor listed close to you.

Go here http://birthmark.org/experts.php and ask advice of one of our doctors.

Missy

mensell09 05-21-2011 05:22 PM

Thanks the one ENT is about of a group of doctors in Cleveland that deal with hemangiomas I know he talked about doing a MRI but didnt sound to sure but I want to do what is best for her and I heard that if it is in the liver it could cause death but like I said before I know nothing about Hemangiomas

Anniina 05-23-2011 11:49 AM

Hello Mensell,

Our daughter has also got a hemangioma on her nose. In the beginning it looked a bit like a bruise until the red spots started to grow. In other words, her hemangioma had both a deep (blueish tinge) and superficial (red) component.

Nasal hemangiomas can be quite tricky and are much slower to involute than those in other parts of the body, so I'd recommend seeing a specialist as soon as possible. The good news is that should a specialist find it necessary, there is now treatment called Propranolol that was helped many children - our daughter included. It is quite an undertaking as the child will need to be on it for months but if that means surgery and serious emotional distress can be avoided that way, it's worth it in my opinion. There are potential side effects like with any drug, but they are rare.

Of course, it could be that your child will be fine with any treatment, but due to the tricky nature of nasal hemangiomas I'd recommend looking into this treatment.

I can't really advice in terms of a scan, but can say I'd also heard internal hemangiomas were possible and also dangerous and was worried about our daughter's breathing which at times seemed a bit labored. The specialist we saw just listened to her chest with a stethoscope and said she was fine and her lungs sounded good, but we never had a scan. Our daughter is nine months old now.

All the best with everything!

mensell09 05-23-2011 09:04 PM

I am seeing a specialist and we go tomorrow and he had mention about putting her on propranolol and doing an MRI and also scan down her air ways but I am not sure what is best. I have heard even doing propranolol treatments that I could still have do surgery other treatment. I have notice a lot of redness above her eyes and of the other side of her nose. By the way hers is full grown its was not flat and then grown after she was born, she came out with it at the size of a bounce ball and it has grown from there so maybe my daughters is bigger than what yours was idk but your advice has really helped.


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