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  #1  
Old 01-13-2011, 10:28 PM
KsMOM KsMOM is offline
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Default Kayleigh Update!

Hi again!
As you all know my daughter's a 26 weeker with a hairline H. It had started to ulcerate in early/mid December. Both her Ped and Neonatologists that she sees still don't want to do anything and say it will just run it's course as of now...we will be seeing a pediatric dermatologist as well (Ped just wants to play it safe and have another opinion by someone who sees a lot of these).

Anyway, at her NICU follow up on the 30th of December, a small bit of the scab accidently got scraped off (by one of her doctors! lol, he felt bad), I saw a bit of blood where it had fallen off, but it quickly scabbed up again by that evening. It didn't seem to bother her at all.

Now it looks like the scab is getting smaller or healing (though it still looks gross!). Our Ped said that an ulceration can be a complication with Hemangioma's, but it also means that it is starting to go away (NICU docs agreed). Not sure how true that statement is...but my ped did say he's seen some pretty bad H's before, so I'm hoping he somewhat knows about H's. Anyway, I myself do see changes in it that make me think it is starting to involute...it is still more grey than it used to be (but that change happened before the ulceration so not sure it means anything), it is also more wrinkly and feels less "full" when I push on it...and rises more slowly after I push my finger on it. It still looks about the same size as it did in Nov/Dec...definitely no bigger though, so that's good!

All in all, as of right now it's still not bothering her. Is there anything (besides surgery) that can help a H get smaller after it has stopped growing?? Also, for those of you who opted for surgery, when did you do it?? Was the H already in late stages on involution or did you do it before it started to involute?? How old were your LO's??

Finally here are some pictures I took today:
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  #2  
Old 01-13-2011, 11:38 PM
missy missy is offline
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Can't answer your questions, but ... OMG ... she is sooo gorgeous!! You must be so proud.

How is she doing otherwise? Any issues now?

Missy
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  #3  
Old 01-14-2011, 12:00 AM
KatieG KatieG is offline
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She's adorable! I would still suggest she see an H specialist just to go over things about your options.

We had surgery at 4.5 months to remove my daugthers Hemangioma. However, with your daughter being a preemie I am guessing if you chose surgery they would want to wait a while until she was stronger, etc. We had hers removed before it was involuting. We were actually told even though it had stopped growing, that it could start up again around 6 months or so. We just chose to get remove it.

I think if I remember correctly that you live near me so if you need help let me know!
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Old 01-14-2011, 12:37 AM
KsMOM KsMOM is offline
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Thanks ladies! She has been doing well at home...she has been home for a month today actually and is over 7lbs now. We think she might have some reflux because she vomits sometimes, but other than that she seems to be doing very well And she's got quite a big personality for such a tiny thing
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Old 01-14-2011, 12:41 AM
KsMOM KsMOM is offline
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Katie- Thanks for the info! I really hope it doesn't start growing again!! And yes, we probably would wait till she's bigger if we chose to remove it...just out of curiousity, how complicated of a procedure is it?? Does it require intubation?? That is one of the biggest reasons I would want to wait, I do not want her on a vent again!! The thought of scares me!
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Old 01-14-2011, 01:13 AM
KatieG KatieG is offline
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Quote:
Originally Posted by KsMOM View Post
Katie- Thanks for the info! I really hope it doesn't start growing again!! And yes, we probably would wait till she's bigger if we chose to remove it...just out of curiousity, how complicated of a procedure is it?? Does it require intubation?? That is one of the biggest reasons I would want to wait, I do not want her on a vent again!! The thought of scares me!

It was not a complicated procedure, but they do go under. Not sure if they are intubated or not? She was probably gone for about an hour total. She came home with stitches and a drainage tube, but hers was compound and she had a lot of H under the skin which is why she needed the drain. The drain came out 2 days later and then the stitches came out 10 days or so later. She handled it very well. No side effects at all from anything!

Do you have a pediatric dermatologist? I went to a nice one for my daughter's vascular birthmark on her leg if you need a recommendation. I also have a great doctor in NYC that removed her H.
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Old 01-14-2011, 02:12 AM
KsMOM KsMOM is offline
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We haven't been to see a pediatric dermatologist yet, but her pediatrician is going to refer us to someone he knows. You're in Nassau right?? Who did you guys go to??
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Old 01-14-2011, 04:42 AM
smurph smurph is offline
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Hi there! Oh my goodness! She is getting so big and strong! She is really adorable!! I think I would definitely see a specialist because they deal with hemangiomas (ulcerations, involution) every day. I can certainly understand your hesitation for surgery..I would feel the same way, but maybe they would suggest medication or laser.
My daughter had surgery but it wasn't until she was 5 years old, mostly because she was treated with oral steroids during her first year. She did need to be intubated though (it was on her lip). My daughter's ulcerated when she was about 8 weeks old...it didn't begin to involute until she was about 13-14 months old. The surgery she had last year was to fix the scarred area she had from the ulceration...so that's one of the reasons I think seeing a specialist might be a good idea. They can certainly let you know your options and monitor things. If you are near NYC, you are in luck because they have some fantastic doctors there!

So glad to see your daughter is doing so well!
Shannon
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Old 01-14-2011, 02:01 PM
jkmorgan333 jkmorgan333 is offline
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My daughter was put on propranolol at 10 months after her H stopped growing. In hindsight, I wish we had started it the first time we saw the pediatric derm when she was 4 months old. In the six months between the initial appointment and when we finally started propranolol it had grown quite a bit. She stayed on propranolol from May 2010-December 2010. We saw significant reduction in size of both of her hemangiomas. (They are on either side of her head behind her ears.) She is now 18 months, and we are having surgery on January 21 to remove the larger hemangioma. Since we've stopped the propranolol we've noticed significant regrowth, but since we've got surgery scheduled we aren't going to put her on the meds again. However, we are only removing the larger of the two hemangiomas, and we will see her derm again in late February to look at possibly starting propranolol again to stop the regrowth of the smaller H so it doesn't get large enough to require intervention.
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  #10  
Old 01-14-2011, 07:03 PM
KatieG KatieG is offline
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Quote:
Originally Posted by KsMOM View Post
We haven't been to see a pediatric dermatologist yet, but her pediatrician is going to refer us to someone he knows. You're in Nassau right?? Who did you guys go to??

Yes in Nassau.

Here is the derm I went to for her leg:
Pediatric Dermatology Assocs
2001 Marcus Avenue Suite S40
New Hyde Park, NY
11042
516-352-6151

and I saw Dr. Waner in NYC for the actual Hemangioma and removal. I would honestly say skip the Pediatric derm and go straight to Dr. Waner. It will save you a step.
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