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  #61  
Old 10-07-2010, 06:04 PM
lrlt2000 lrlt2000 is offline
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Pat,

Thanks for posting such detailed accounts of your experience! Our 10 week old daughter has a NTH and we have been on Propranolol for almost 4 weeks now. There is little decrease, but no growth. The opinions we've gotten on laser are mixed. I'm not sure if maybe it was more appropriate in your case because it wasn't so big when you started. Now, our daughter's covers most of the front of her nose. I'm concerned that laser treatments might cause this entire area to scab and scar over, because the bright red part is so widespread



I'm hopeful from your story, however!

Last edited by lrlt2000 : 10-07-2010 at 06:52 PM.
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  #62  
Old 10-08-2010, 03:51 AM
bumfuzzle bumfuzzle is offline
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Hi lrlt2000,

Well let me start off by saying we are no experts, but to us that looks like a prime candidate for laser.

It's sort of hard to see in our pictures because of where our daughter's superficial H was (the bright red part). Hers was more around the edge of her nostril and inside. But that bright red superficial H is exactly what laser is most effective at treating. That area did in fact turn black from the first treatment, and scabbed up within a few days, but then just sort of flaked off with nothing but new baby skin underneath. Actually that's not entirely true, it took two or three treatments before the superficial area was completely gone, but still.

Your picture appears to me as if your daughter's H is almost completely superficial. It may just be the picture though. Do you have any of the deeper purplish H?

Anyway, I understand being hesitant about this, but I would definitely recommend talking to a doctor that specializes in the pulsed dye laser treatment of these. Our Dr., Dr. Delfanian, I'm sure would be happy to speak with you. His contact info is available on this site, or e-mail us directly and we'll pass it along.

And lastly let me just say that despite seven laser treatments our daughter has zero scarring and I've never heard of anybody having scarring from these lasers.

Good luck.

Pat
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  #63  
Old 10-09-2010, 03:09 PM
lrlt2000 lrlt2000 is offline
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Thank you, Pat! Actually, in the last week I've notice more of a deeper area underneath that superficial part. It seems to have gotten bigger in the past week. EEK! I prompted the docs to re-weigh her and sure enough, her dose of Prop went from .75 to .85mL.

We actually are also in contact with Dr. Gregory Levitin, a well-known birthmark doc and recognized by the VBF. He is the one who has recommended both Prop *and* laser, while our docs at Duke say no laser at this point. I'm planning to meet with Dr. Levitin if and when he makes it to our area (he's supposedly working on opening an office here, but it's taking forever!!)

So, the laser never actually opened her skin, it just zapped the vessels without damaging the surface of the skin?? That's what I'm afraid of--ulceration from the laser.

Thanks again! I'm going to try to push for laser consult.
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  #64  
Old 10-10-2010, 05:54 AM
bumfuzzle bumfuzzle is offline
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Hi lrlt2000,

So glad to hear you've been in contact with Dr. Levitin. There is no better expert on these things and if he recommends laser and Pro that is what I would do.

And no, the laser does not open the skin, it attacks the blood vessels directly. To be honest I can't really explain how it works, that's something for the doc to explain, but from our experience there has been zero scarring from these treatments. Also, they are very fast, don't require any anesthesia, and while they do hurt a little bit, our baby has never been upset for longer than five minutes after the treatment was done.

We also feel very strongly that the laser is the reason our deeper hemangioma hasn't grown since we began. Honestly I can't think of a reason not to do laser on a nasal tip H.

Anyway, best of luck to you. Be sure and post how things go as there are always others in the same boat.

Pat
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  #65  
Old 10-14-2010, 04:45 AM
ongsyen ongsyen is offline
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Default Nose tip hemangioma at philippines-Dr Hochman fly there once a year for H surgery

Quote:
Originally Posted by ambetrp View Post
Hi Pat. Very cute baby!

We have similar case like your baby...

taken 1 month and 4 days
http://www.postimage.org/image.php?v=PqeSPc0

she is 3 months and 3 weeks now
http://www.postimage.org/image.php?v=gx7SeVJ

Actually, it started with a red dot after a month, on her 2 months it became bluish and more visible. we consulted a pedia derma and she confirmed that it is indeed hemangioma but unsure what type it is. she undergone one laser session treatment last june 12 already but i did not see any improvement. her nose became evenmore bigger and darker. this coming saturday she will undergo another laser treatment. but i am unsure whether to pursue it or not as i can't see any positive effect. i am attaching two pictures here, one when it was just a red dot, about 1 mos, and one which was taken recently at 3 1/2 months. hopefully, her doctor is familiar with propranolol medications. I inquire in a doctor from texas thru email and suggested to have propranolol med. btw we are here in philippines, sad to say only few pedia derma expert here.
Hi
We are Malaysian.We went Philippine at National Children Hospital, surgery was doned by Dr Marcelo Hochman-US doctor when my baby was 8 moths old.My baby H is same as yours, you may watch it under facebook search for nose hemangioma or nosehemangioma@gmail.com.
NCH doctor told me they never do surgery for hemangioma and doctor Hochman had trained them up.I saw a lot of age 6-12 philippine children with big big serious H , their parents claimed they cant find doctor to cure them.Lastly, they met Dr Hochman.He did operation on 8 childrens per day for 3 consecutive days.He is great.
You may write to http://www.hemangiomatreatment.org and write to them under contact page Manager@HemangiomaTreatment.org.Doctor Hochman is the the chairman and he fly philippine once a year to do surgery on H.
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  #66  
Old 11-03-2010, 03:09 PM
mommy2 mommy2 is offline
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I think that lasers done by an experienced doctor could do wonders for the bright red color. If there is underlying deep hemangioma you probably won't see much of a change on that portion. My son had both superficial and deep portions. We saw great results from lasers on the superficial portion and then later had excision for the deep portion.


Best of luck to you,
Sarah
Quote:
Originally Posted by lrlt2000 View Post
Pat,

Thanks for posting such detailed accounts of your experience! Our 10 week old daughter has a NTH and we have been on Propranolol for almost 4 weeks now. There is little decrease, but no growth. The opinions we've gotten on laser are mixed. I'm not sure if maybe it was more appropriate in your case because it wasn't so big when you started. Now, our daughter's covers most of the front of her nose. I'm concerned that laser treatments might cause this entire area to scab and scar over, because the bright red part is so widespread



I'm hopeful from your story, however!
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  #67  
Old 11-13-2010, 08:50 PM
bumfuzzle bumfuzzle is offline
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Default Eighth Laser at 10 1/2 months old

Our daughter Ouest underwent her eighth laser treatment with Dr. Delfanian last week. We had skipped the previous month as there hadn't been any change, but decided to go ahead with it this month.

The Dr. was very happy with how things have gone. For this treatment he turned the "power" down and she received less pulses. A week before this treatment we noticed that she seemed to be getting a slightly raised bump in the H, and now a week afterwards it is gone again. Right now we have just a slight purplish color and a tiny bit of typical deep hemangioma growth. Nobody else has ever mentioned her H to us in passing as it is so unnoticeable.

Anyway, at 10 1/2 months we are hopeful again that this may be her last treatment. We will continue to wait and see and go in for more treatments when and if we notice any change.

Pat

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  #68  
Old 11-14-2010, 12:12 AM
missy missy is offline
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Wow! She looks great! You must be so pleased.

Thank you so much for coming back to keep us updated. We appreciate that very much... it gives other parents so much information!

Missy
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  #69  
Old 11-18-2010, 09:51 PM
vmarie40 vmarie40 is offline
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Bumfuzzle,

Your daughter looks great. I have been checking this site for months and always come back to your post to check her progress.

I also have a daughter who was diagnosed with a nasal tip hemangioma. My daughter was diagnosed at 9 weeks with a nasal tip hemangioma. We noticed a "bruise" on the tip of her nose at about 6 weeks and thought nothing of it until it did not go away. When she was diagnosed her doctor wanted to do the "wait and see" method, and I allowed it for one month.

My daughters was a deep hemangioma, we never got the dark red appearance, just a blue-ish tint and it stared to grow. After a month of waiting (and growth) we went back to the doctor determined to get some kind of treatment. From all I read I really wanted to try propanalol. When we arrived the doctor said in that month he had gone to a conference and saw amazing results on some children with the use of propanalol. We were excited and scared but very optimistic to try it.

We are extremely happy with our decision, the "swelling" stopped immediately and the color improved. After just a couple of weeks we no longer had people ask, "did she bump her nose?", and she is a happy wonderful baby.

She is now 9 months old and you can barely see it. I think I only notice because I am looking for it. She will be on the medication through the growth phase I assume and will probably come off at the end of spring or early summer. Currently she is 17 pounds and takes 1.25ml of propanalol 3x a day.

I just wanted to post to give parents hope that one of the methods posted on this site can help their child.

Vanessa
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  #70  
Old 03-08-2011, 05:02 AM
bumfuzzle bumfuzzle is offline
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Default 15 months

Hi everyone,

Just thought I should pop in with an update on Ouest's nasal tip hemangioma. In January Ouest did undergo her ninth laser treatment. Since then there has been no change, which is a good thing. There is a slight bit of purplish color, and her nasal tip isn't a "perfect" shape, but it is very close, and truthfully nobody has ever asked us about it. Nobody notices but us. In fact, I've struggled to find a picture from the past two months in which you can see it at all.

Anyway, we feel very fortunate. We know we're not completely out of the woods just yet, but we feel like we're getting very close.

Again, for similar hemangiomas we can't recommend the laser treatments highly enough. The key in our opinion is to get on it immediately. The lasers stopped Ouest's H growth in its tracks. And all nine treatments were done without anasthesia, with little pain, and no side effects.

All the best.

Pat, Ali, and Ouest
www.bumfuzzle.com

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