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-   -   Hemangioma on Nose (http://birthmark.org/board/showthread.php?t=3666)

bumfuzzle 01-30-2010 12:05 AM

Hemangioma on Nose
 
Hello Everyone,

My wife and I are Americans currently living in Mexico. We had a baby girl seven weeks ago. About three weeks later she had the spot on her nose. Like most, we at first assumed she'd just bumped against my collar bone or something. It didn't go away, and yesterday we got the news that it is Hemangioma.

The dermatologist told us not to worry, to just monitor it and get back to her in a month. We agreed, until we got home and got on the internet. Now we are absolutely freaking out. We've got an appt. with a different dermatologist on Tues.

We are not at all the passive wait and see type people and already want to take a proactive approach to it. But we're still trying to get a grip on what exactly this all means.

Our biggest question is what are the chances that this thing won't get any bigger? It's already gotten a tiny bit larger in the past four weeks. From the internet you get the impression that they all end up very big. Is this true, or just a case of only the worst cases getting talked about?

We're also very intrigued by the Propranolol drug. From everything we've read here it has done amazing things. Our hope is that by moving quickly on this we can at least stop its growth.

Anyway, we're new to this and have spent the day researching and crying and we could use any advice any of you might have for us.

Lastly, we're wondering if anybody knows of a doctor in either Minnesota (St. Paul area) or Oregon (Portland area) that has been using Propranolol? We've got family in these areas.





Thank you all.
Pat and Ali Schulte

kriswoodmckay 01-30-2010 12:30 AM

Hemangioma on nose
 
Hello!

I feel so relieved to read your post. Our little daughter Meghan also has a hemangioma on the tip of her nose just diagnosed yesterday. After much researching and crying today, I fell across your post and am so grateful to know that we are not alone. Looking at the pictures of your beautiful daughter and her hemangioma are like looking at my own daughter's. Thank you for posting!

It would be great to continue dialoguing with you as we journey through this diagnosis and find some answers.

Kristine

bumfuzzle 01-30-2010 12:42 AM

Hi Kristine,

Thanks for writing in. I agree, I hope we can help eachother out with this. How old is Meghan? Where are you located? It would be great if you could e-mail us (work at bumfuzzle dot com) a picture of Meghan so we can see that we're not alone in this as well.

Let's keep in touch. Please pass along any info you might come across.

Patrick

kriswoodmckay 01-30-2010 01:19 AM

Hello again!

We are located in Ontario, Canada. Meghan is 10 and a half weeks old. We noticed the spot on her nose about three weeks ago and just like you, thought it was a bruise due to bumping her nose on our shoulders. When the spot did not go away, I raised my concerns with our family doctor who diagnosed it as a hemangioma. She has referred us to a Ears, Nose Throat Specialist who we will see February 24th. At this point, we feel devasted at the prospect of the diagnosis and like you, wonder if what we have been reading on the internet are worst case scenarios.

I will forward a pic of our beautiful daughter Meghan to your e-mail asap

Thanks again! My husband and I feel so much better knowing that we are not alone in this!

Kristine

lpm 01-30-2010 12:42 PM

First, congrats on the new baby, and try not to stress out too much. While no one can tell you with absolute certainty how things will turn out, I think that if you have not seen very rapid growth by 2-3 months of age, it is unlikely that the hemangioma will suddenly get exponentially larger.

I do think that you see the worst cases on the internet. You likely have known plenty of people that had hemangiomas, or their kid has a hemangioma, but it was small and you didn't take note of it. It is always good to get a second opinion, but don't spend time obsessing about it - try to enjoy the kiddo while she is still a baby.

kriswoodmckay 01-30-2010 01:34 PM

Thank you for giving us the first sign of hope!!!! My husband and I are leaving on our first family vacation with our baby tomorrow and we can leave with our hearts a little lighter - thank you :)

bumfuzzle 01-30-2010 06:14 PM

Laser Surgery
 
We've been frantically shooting off e-mails and making calls the past two days. Today we got a reply from Dr. Delfanian in Minnesota. He told us that given the nature and location of our daughter's H we need laser treatment quickly.

We have yet to connect over the phone.

If anybody has any thoughts on this Dr. we'd love to hear them. A search of his name on here turns up glowing recommendations, however those appear to be mainly for PWS cases.

We're very concerned with the idea of undergoing laser surgery and after reading this board had thought Propranolol would have been the better choice.

Anyway, I'll write back and let you know how our conversation goes.

Pat

bumfuzzle 01-31-2010 02:35 AM

We spoke with Dr. Delfanian on the phone tonight after he gave us his home number and encouraged us to call. That of course was very nice of him.

We spoke for about fifteen minutes and his recommendation is to move rapidly on this using a pulse dye laser treatment. Because of the location of our daughters H on the tip of her nose he feels that treating it early is the absolute best option. My wife and I agree as you just never know how these things are going to grow.

We are flying to MN in two days to meet with him and if after discussing it further we decide that this is the best treatment then we will be going in as early as Friday.

Also, we brought up the possibility of Propranolol as a treatment but he does not believe it will be effective with our daughters type of H. Apparently the Pro. is more effective in treating larger masses, but not so much on the thin tissue of the nose.

We'll keep you updated.

abatie 01-31-2010 03:44 AM

I'm wishing your family good luck in MN. Dr. Delfanian had given us suggestions on finding a doctor for our daughter. Hopefully you will get a good result for your beautiful baby. Pretty brave to go to MN during the winter from your home in Mexico. We were there last week for our daughter's appointment at Mayo Clinic and got snowed in for an extra day!

bumfuzzle 02-01-2010 09:52 PM

Pulsed dye laser & Propranolol
 
We've received a number of replies from various specialists around the country to our e-mail questions about our daughters nose tip hemangioma.

Essentially this is what we've gotten. Without fail they have suggested the pulsed dye laser treatment as a first line of attack. Each of them has also strongly recommended doing this as quickly as possible to try and stop the growth. This is encouraging to us as we've already been able to set this up to be done in under a week.

The replies regarding Propranolol have been mixed. One doctor told us it wouldn't work on this type of H. Another said he hasn't seen it be successful on this type. But two others have suggested that they believe it will work. The Arkansas Children's Hospital doctors seem to be strong believers in it. They believe in a combination treatment of Pro. and Laser for the H on the nose. They tell us that the laser won't treat the deeper bluish components of the H but that the Pro. will.

Anyway, I believe we are going to proceed with the laser right away, see how she responds to it, and then consider the Propranolol afterwards.

We'll keep you posted.


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