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  #1  
Old 04-26-2010, 03:23 PM
kemeyers kemeyers is offline
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Default New to hemangioma world

Hi,
My daughter was born 3 weeks ago (at 37 weeks) with multiple hemangiomas on her face and one on her spine. We are going to the Vascular Anomalies clinic at Children's National Medical Center in Washington, DC tomorrow. I have a few questions that I was hoping some of the parents here may be able to share their experiences with us:

1. For those who had hemangiomas present at birth, how long before it started to grow? (So far, it hasn't gotten any bigger!)

2. Again, for those who had hemangiomas present at birth, did you wait until growth started to start treatment?

3. Has anyone had a hemangioma present at birth that did not grow?

We know from ultrasound that at least her nose tip hemangioma was present at 34 weeks gestation, and in comparing the ultrasound profile with her current profile, it doesn't seem to have grown since that scan.

Of course, we'll be asking the doctors the same things tomorrow, but I was hoping to hear some feedback from parents who have been there. I've attached a picture of our little peanut so you can see her hemangiomas.

Thanks!
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  #2  
Old 04-26-2010, 11:59 PM
missy missy is offline
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I'll have to take the generalization plea, but here goes:

1. How long? Some parents reported growth right away, some not at all.

2. Most doctors will want to use the wait and see approach if the lesions are not growing. Every treatment comes with some risk, so if no treatment is appropriate, than doctors dont' want to put the child through even a small risk.

3. I've known a lot of parents who had children with h at birth that did not grow at all. The woman across the street from me has a daughter like that. She had a forehead hemangioma that never grew. She's in the first grade now and it's gone.

Other parents will share their experiences, but you may not find one that mimics your own.

A question I would add to your list is: How MUCH and how FAST do they have to grow before treatment is critical? and Is the NUMBER of lesions a factor in pushing for treatment.

Please come back and let us know how it goes.

She certainly is a beautiful peanut!! Congratulations on your bundle! I know you must be thrilled!

Missy
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  #3  
Old 04-27-2010, 06:54 AM
nickbar nickbar is offline
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I replied to your email. Let me know if you did not get it
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  #4  
Old 04-28-2010, 02:52 PM
kemeyers kemeyers is offline
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Thanks. We were evaluated yesterday by a team of doctors. They also answered my questions, although they weren't able to say that they'd seen any babies that haven't had them grow, but qualified that with the statement that they see patients that typically get referred after growth starts. Their threshold for starting medications for her is very low, and I have been instructed to call if I even think it may be growing so they can evaluate her. They are also going to start seeing her on a weekly basis, as they cautioned that I am used to seeing her with the lesions and may not be able to notice any subtle changes. We will continue doing a photo journal, and bring that with us to each visit. We also have an MRI in 1 month to look at the depth of the eyelid hemangioma, to be sure that it isn't causing any problems with the shape of her eye, to look for any hemangiomas in her brain, and to rule out PHACE Syndrome. So, we will be busy folks for a while.
Thanks for getting back to me so quickly!
-Kelly
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Old 04-28-2010, 03:38 PM
missy missy is offline
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That sounds like you are getting GREAT care from a proactive team!! YAY!!

One thing that can help evaluate growth is to photograph weekly and include something in the photo to give it scale, like a coin or a small ruler. That way, you can look back and really know, "OK, it's bigger than the quarter this week" and have documentation that the docs will want to see.

You will be busy, but this is good news. Keep us updated and keep up the good work!!

Missy
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  #6  
Old 04-29-2010, 02:58 AM
luxy luxy is offline
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Hi Kelly,

My son was born 10 months ago with 2 hemangiomas: 1 on his scalp (raised) and 1 on his hip (subcutaneous...looks like a bruise). We are in Northern Virginia so we were referred to Johns Hopkins. I actually kind of engineered our referral to Johns Hopkins because I had read about the propanolol trials they were doing. Official diagnosis came after ultrasounds in which they listened to the blood flow to determine which kind of vascular anomaly it was. This is what we've learned about congenital hemangiomas (after 5 visits) and lots of questions on my part.

1) Congenital hemangiomas are much rarer than infantile hemangiomas
2) There are two kinds of congenital hemangiomas: Rapidly-Involuting Congenital Hemangiomas (RICH, pronounced "reesh") and Non-Involuting Congenital Hemangiomas (NICH, pronounced "neesh")
3) Congenital hemangiomas are fully-formed at birth, they do not grow larger
4) The involution rate for congenital hemangiomas is much more rapid than for infantile hemangiomas. If a congenital hemangioma is going to involute (the RICH kind), they will usually do so within 12-18 months vs 5-7 years for infantile
5) Propanolol is used to halt growth, so has not been prescribed at Johns Hopkins for congenital hemangiomas since they are full-grown

This information is virtually NOWHERE on the internet! In my hours of frantic research after my son's birth, I didn't realize that everything I was reading was about infantile hemangiomas. We were given wrong information at every turn: the NICU doctor in the hospital, our pediatrician, the ultrasound technician (at Children's in DC). Thank goodness for the pediatric dermatology crew at Johns Hopkins!

Our son hasn't undergone any treatment because both of his hemangiomas seem to be involuting rapidly. The one on his scalp was so scary-looking and "tall" when he was born...it's almost totally flat now. The one on his hip is harder to gauge because it's under the skin, but we think that one is smaller too. I hope you have good luck as well!
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Old 04-29-2010, 02:06 PM
kemeyers kemeyers is offline
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Thanks!
We are actually heading up to Boston on Monday to meet with Dr. Fay and probably get started on propanolol. Rose, the patient advocate, called me yesterday and spent a lot of time going over NICH, which, like you, was something I hadn't come across in all of my internet searches. They seem to have a more proactive approach at Boston than the reactive plan we'd been presented with at Children's. I am so thankful for VBF and Corinne for hooking us up with Dr. Fay - and frustrated that the folks at Children's didn't just confess that her case is a bit more complex than what they are used to dealing with, and refer us elsewhere.
I'll update again on Monday after we've met with Dr. Fay. Thank you for taking the time to reply, and I'm happy to hear that your son is doing so well!
-Kelly
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