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  #1  
Old 01-06-2012, 02:32 AM
DaniMac0130 DaniMac0130 is offline
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Join Date: Jan 2012
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Smile New here with SO many questions...

Hello, my name is Dani and my daughter Munchie (as I so lovingly call her) has a heman on her forehead.

When it first started developing, our pediatrician was very "wait and see" about it. She's an amazing ped, but has almost no knowledge of hemangiomas. At Munchie's 4 month well visit, I asked if I could see a dermatologist. She said sure and that if I had a problem finding one, to let her know and she could refer us (we don't need referrals with our insurance). I found a GREAT pediatric derm in town.

The ped derm told us all of our options and my head was just spinning. She started us on Timolol and recommend we go to Propanol next. She gave me the name and number of a pediatric cardiologist to get started on the P.

Now, our daughter has been through SO much in her short little 6 month life. The pregnancy was extremely complicated and her birth was as well (something we didn't expect considering everything with our son was very text book and "perfect"). She came early and spent 8 days in the NICU, to the astonishment of her neonatologists. They expected her to be in MUCH longer considering all the issues she was born with, but she recovered FAST. She's my fighter.

So given everything she's already been through, everything our little family has been through, we decided that the propanol is not for us. The cardiologist would have wanted to run a few tests, of course, but also she would have to have the first dose in the hospital and anytime they upped the dosage that would be the same. It just wasn't for us.

So the next step would be seeing the plastic surgeon.

We did that, and some of the first things he said were "A lot of times we're really treating the parent, not the child." That stung a bit. I can't say that I wouldn't love to see her without that H on her forehead... but my biggest fear is her bashing it open. THAT'S why we're treating at all. Otherwise, we'd just keep covering it with headbands and bows.

I expressed this to him, and he went ahead and scheduled her for "Laser Day". So now we have a game plan... she will have the laser on the 26th.

But because my nerves were SO shot that day, I have no idea what sort of results to expect or how many treatments may be needed. I know I should've asked these things, but I was just... out of it that day.

So now I've become CONSUMED with Google and finding results, but truthfully, there's not a whole lot out there.

So that's how I got to ya'll! I'd LOVE some advice... some pictures (if you don't mind sharing) some stories... anything to help my peace of mind.

I've already called the plastic surgeon's office four times with questions and the receptionist is SO nice every time. She knows I'm just nervous. But the plastic surgeon is the chief of plastic surgery for my town's biggest hospital (and I live in a large city). So clearly he's more than capable. He did tell me that there will be lots of babies there that day. He gets the laser every 6 weeks, so if she needs more than one, which I'm sort of counting on, it will be 6 weeks after that.

So that's our story... any thing you can offer me would be great!!

PS here's my Munchie.
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  #2  
Old 01-06-2012, 11:58 AM
missy missy is offline
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Hi and welcome!

First: take a deep breath!

So,
Quote:
We did that, and some of the first things he said were "A lot of times we're really treating the parent, not the child." That stung a bit. I can't say that I wouldn't love to see her without that H on her forehead... but my biggest fear is her bashing it open. THAT'S why we're treating at all. Otherwise, we'd just keep covering it with headbands and bows.
That was not the correct way to say that. All infantile hemangiomas do involute. I've seen kids where involution was at six months. I've known of kids where involution was puberty (12 or 13 years). But they all do go away. However, they can bleed (like your concern) or ulcerate (which is very painful) or leave poor cosmetic results (which will need surgical intervention later) or the child is teased at school (or playgroup, even). I remember one case where someone called child services because they thought the parents had hit the child.

All of that is extremely stressful to parents and families. This is not a time to stress ... it's a time to play.

I think what he meant, really, is that technically hemangiomas don't need treatment. But all the other things that surround the issue DO need treatment.

And she will be fine! I promise! No one can really tell you what the results of laser will be .... every birthmark responds in its own way.

There are some before and after shots here: http://birthmark.org/node/20 Try this too http://birthmark.org/board/search.php?searchid=143916 and look at the ones with the little paperclip (they will have photos attached).

But, first: breathe!

Come back in three weeks and let us know how things went!

Missy
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  #3  
Old 01-07-2012, 02:43 AM
smurph smurph is offline
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Oh my goodness! Your daughter is ADORABLE!!! If there's one thing I've learned about surgeons (of any type) it's that they don't always say the most sensitive things. They are amazing at what they do, but they don't often have the bedside manner of a pediatrician. (Although I'm sure there are certainly exceptions!) I know my daughter's surgeon said a few things over the years that totally freaked me out....but when it came down to it, she received excellent care, he did an incredible job on her surgery and that's what we needed him for, so I tried to always keep that in mind!

So try not to worry too much about what he said and just focus on the plan for your daughter. My daughter had laser (although she was much older) and it went very well and had really good results. Like Missy said, every hemangioma is different, so you will just have to see how many treatments are needed, etc. Sometimes the unknown is rough, but I bet once you get going with her treatment you may feel your nervousness starting to subside. At least, that's how I felt anyway. Good luck with everything and keep us posted!

Shannon
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  #4  
Old 01-09-2012, 12:23 AM
emilymathews2004 emilymathews2004 is offline
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Hi Dani! Your daughter is stunning!!!

My daughter has an H on her lower lip and had her first laser treatment and a steroid injection on Friday. She's 10 weeks old, and she had to have gas anesthesia for the treatment because of the location. I was obviously apprehensive about the whole thing, but she was back in less than 20 minutes, and the hardest part was just the fasting (no nursing from 2 AM till 8:40 AM). We even flew to DC that same afternoon and she was perfectly fine. In fact, better than fine because my daughter's H had ulcerated and was extremely painful and the laser took the pain away. The results have been great with just one treatment, and we saw a 50% reduction in size. We're seeing a pediatric derm on the 19th and will probably start the propranolol then... hopefully. Anyway, all the nurses said, "This is your first treatment?? We can't wait to see her back again!" So I'm assuming we'll be back for more, LOL!

Anyway, don't worry- the laser treatment will be a breeze for your daughter, I'm sure! And hopefully it will help! Good luck!
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  #5  
Old 01-10-2012, 03:25 AM
nickbar nickbar is offline
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Hello,

I would love to talk with you more in detail...
I am a bit confused on the option of laser with this type of hemangioma. I am not sure of the experience this doctor has, and I am sure he/she has seen a lot in a big city, but I would really like for you to consider having an opinion from Dr. Gregory Levitin. He is a specialist dedicated to this field and has extensive experience treating very similar hemangiomas. Would you be willing to share her photos with him and what your doctor plans? You can write to him directly through the vbf ask the expert or you can email me information and I can forward it to him. It just might give you some background information on treating hemangiomas to know what to expert and what to ask/look for.
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  #6  
Old 01-10-2012, 05:19 PM
DaniMac0130 DaniMac0130 is offline
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Connie, that would be fine... But where is he? We're in North Florida and we can't afford to travel...
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