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  #51  
Old 07-17-2010, 12:12 PM
bumfuzzle bumfuzzle is offline
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Default Laser Costs

Hi Melea,

Congrats on your new baby girl. Glad to hear you've decided to get her treated early. We are so so happy with our decision to do so and the results have been absolutely amazing.

Cost for the treatment here is as follows:
Doctor - $675/treatment
Laser - $1,825
Operating Room - $815

As Minnesota residents we get a 48% discount on the laser and OR costs. Also, our doctor doesn't have his own laser at the hospital. An outside company brings it in for the treatments. I imagine that if the hospital has the machine the costs would be lower.

If you need another medical opinion contact Dr. Delfanian. His contact is on this board. We have been very happy with him and he will give you a straight answer right away.

Best of luck.

Pat
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  #52  
Old 07-17-2010, 12:25 PM
bumfuzzle bumfuzzle is offline
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Default Laser #6

Ouest had her sixth laser treatment yesterday. The results thus far really have been phenomenal.

This was one of the harder treatments she's had simply because she is now seven months old and is so much more aware of what is going on around her. Sending her off with the nurse was especially hard for me. But as always the treatment was over with in less than fifteen minutes and she came right back to us none the worse for wear. She cries pretty hard during the procedure, but doesn't seem to be in any pain once it is over with. By the time we get in the car she seems to have completely forgotten it even happened.

Here is a pic of her having lunch afterwards. You can see the darker burnt area. This usually takes a few days to disappear. The swelling will also go down considerably during that time. I'll try and post another picture in a week to show the progression and how good her nose is looking.

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  #53  
Old 07-17-2010, 03:49 PM
Melea Melea is offline
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Hi Pat,

Thank you for your soon replay, we really would like to start her treatment as soon as possible, we are working on getting her passport now.
is this the total of the cost of all the treatment or is this every time she get a laser?

We'll follow your advise and try to get your doctor's opinion, but we are planning taking her on Miami Children Hospital with Dr. Duarte, because is easier for us fly to Miami, My husband use to be an AZ resident . you think if we take her to AZ. they would give us a discount too, or is that different in every state?

Thank you and so glad your beautiful baby is getting better,
Melea
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  #54  
Old 07-17-2010, 05:01 PM
bumfuzzle bumfuzzle is offline
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Hi Melea,

Unfortunately that is for each treatment. It really does add up as the months go on. However we've seen great results making it all worth it.

I'm sure that each state is different. We were still residents of MN so were able to get the discount. I'd be very sure to talk to the hospital before the treatment and inquire about assistance.

I'm far from an expert as far as billing and insurance goes though. I believe there is somebody here on this board that could help steer you in the right direction. Hopefully they'll chime in.

Also, just so you know, when we first discovered our daughters hemangioma we were living in Mexico. We did find a doctor in Guadalajara that did laser treatments, but in the end decided to just come back to Minnesota and stay with family while we treated her. I'd be willing to bet there are doctors in Mexico City that could perform the treatments as well. Just a thought.

Anyway, we wish you all the best. Please let us know if we can be of any help.

Pat and Ali
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  #55  
Old 07-17-2010, 05:50 PM
jacobs_mom jacobs_mom is offline
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Bumfuzzle,

Thank you so much for all your posts and the pictures of your daughter. She is a beauty! My 3 month old son has a hemangioma on his nose. It is a superficial hemangioma, but there is inner nose involvement so aside from the cosmetic concern, I'm also worried about destruction of nasal cartilage. We started with corticosteroid and have now started propranolol. Keep the posts coming-- They give me so much hope!

Jacobs Mom
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  #56  
Old 07-28-2010, 02:45 PM
bumfuzzle bumfuzzle is offline
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Default Laser #6

jacobs_mom - Good luck. We're hoping that it all works out for you and your son.

Well Ouest had her sixth laser treatment last week with Dr. Delfanian. Here is the latest picture. The laser "burnt" (I don't know if that is the right word to use) her nose a bit more this time than it has the past few so it is taking slightly longer to heal up. This is the redness in the picture. I suspect it'll be gone in another couple of days.

A couple of days ago we were looking at her nose from directly above. This is the view that most showed how much the hemangioma was distorting the shape in the past. However now when viewed from above it almost shows no distortion. I think a lot of that has to do with the laser treatments while some of it has to do with the fact that she is growing. Seems to me that while her nose grows with her body that if the hemangioma stays the same size it will look better and better. If that makes sense. Whatever it is, her nose is looking really good.

All the best to the rest of you. We hope everyone is having success with whatever treatments they are using. These hemangiomas are a hard thing to deal with, especially in the beginning, but over time, assuming the treatments are doing their job, you begin to forget all about it.

Pat, Ali, and little Ouest

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  #57  
Old 07-29-2010, 03:26 AM
ambetrp ambetrp is offline
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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.
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  #58  
Old 07-29-2010, 04:00 AM
bumfuzzle bumfuzzle is offline
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Hi Aileen,

Your daughter is beautiful. I'm sorry that she is having to go through this, but I am glad to hear that you are being proactive in getting her treatment.

After our daughters first laser treatment we thought we saw some improvement. She had two types of hemangioma, a superficial area around the rim of her nostril, and also the deeper purplish hemangioma on the tip. The superficial area at first seemed to shrink considerably, but within two weeks it again appeared to be growing. We consulted with our doctor and he agreed we should do another treatment right away, about three weeks after the first.

Since that treatment we have seen steady progress. The superficial hemangioma which was bright, almost blood red, has completely disappeared, leaving only the deeper hemangioma. That has also improved more and more to the point that now it is actually getting hard to see it.

Your daughter's hemangioma appears to be a bit more advanced than ours ever got. I don't see the sort of superficial area that we had. It looks to be more of the deeper variety. (Again, sorry, but I'm still not sure of the correct terminology.) I know that you are wavering as to whether the laser is doing any good, but my advice would be to stick with it.

Of course, I'm no doctor, I can only tell you what our experience has been. It has been very good. The treatments cause her some immediate pain, but within minutes it is over and she doesn't seem bothered by them. We go in for a treatment roughly once a month, and will continue to do so for at least a few more months.

I would suggest e-mailing your photos to our Doctor for advice (delfanian@yahoo.com). Dr. Delfanian is a very nice guy who sincerely wants to help our children avoid long term physical and emotional damage.

I would also suggest exploring Propranolol further. You'll get lots of opinions on whether or not it will help. The ultimate decision is yours.

Anyway, I hope this helps a little. Please feel free to e-mail us anytime and let us know if there is any way we can help.

All the best.

Pat, Ali, and Ouest

Last edited by bumfuzzle : 07-29-2010 at 04:17 AM.
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  #59  
Old 08-28-2010, 07:55 PM
bumfuzzle bumfuzzle is offline
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Default After 7th Laser Treatment

Ouest had her 7th laser treatment yesterday. She is now 8 1/2 months old.

When we arrived and met Dr. Delfanian he took one look at Ouest, sat down, and said, "You guys, if ever there was a success story, this is it. This is a success."

And he's right. Ouest's nose looks fantastic. We gave her another treatment yesterday, but Dr. Delfanian turned down the "power" on it a bit. He decided that it looked so good that it wasn't worth doing too much. We also decided that Ouest could skip next month's treatment, assuming we don't see any growth during that time, and that we'll reassess again in two months.

I can't tell you what good news all of this is to us. Looking back at pictures from when this all started you can see that her hemangioma was growing rather rapidly. We are so thankful that we attacked it immediately upon finding out that what she had was a hemangioma. We all truly believe that we stopped this hemangioma in its tracks.

There is even considerable hope between us and the doctor that Ouest won't need any further corrective surgery in the future. The h right now is almost invisible to most observers (at least after the swelling from the laser treatment goes down).

Anyway, I'm rambling a bit. But I just can't overstate how happy we are with the treatment that Ouest received and the outstanding results it has produced. And also how adamant we are about attacking these hemangiomas as soon as possible. We are not, and have never been, big believers in the wait and see approach. Now obviously there are certain hemangiomas that this is perfectly prudent, but with a nasal tip h we think you need to go right after it.

I'll continue to post updates when they happen. For now, with a little luck, this will be it for a couple of months at the least.

Wishing the best to all of you.

Pat and Ali Schulte
www.bumfuzzle.com

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  #60  
Old 08-29-2010, 12:05 AM
missy missy is offline
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Thank you so much for coming back and letting us know how things are going. Your story here means so much to other parents and VBF appreciates that you take the time to type it all out and upload the photos.

Those eyes... OMG... She is the happiest looking thing I've seen in a long time.

Missy
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