Desperate for help with baby's hemangioma - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-12-2015, 08:24 PM
Trinity1019 Trinity1019 is offline
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Default Desperate for help with baby's hemangioma

Hello,

I am so glad I found this forum -- I just discovered my almost 8 week old daughter has 2 hemangiomas, one on the back of her scalp and one on her cheek. After doing a ton of research, I am desperate to get immediate treatment for the one on her cheek ASAP before it grows larger.

The backstory - I noticed the one on her scalp within hours of her birth. I actually dismissed it because I thought it was from the heart rate monitor they mentioned they used during labor. To date, at almost 8 weeks, I haven't noticed much change in the color or size of this mark. It is slightly raised but I honestly can't remember if it's always been that way or not.

The second mark first appeared on her face 12 days after birth, very small, looking like baby acne. Then she got baby acne pretty bad for 2 weeks and it just blended in with that. Her baby acne cleared up at almost one month old to the day and the small "zit" remained. I just assumed it was a straggler from the acne. But I kept watching it, and over the last three weeks, it has turned from pink to bright red, and it has definitely grown in size (although I'm not sure if I would call it "rapid" just yet..) It probably was no more than 2mm at the beginning and is now nearly 5mm. However, it is still totally FLAT.

I took her to the pediatrician on Friday and he diagnosed both of them as H's, but then later said, "Maybe the one on her cheek might be a PWS since it's still flat." (I think that's wrong because aren't PWS present at birth and far far larger in surface area than this mark?) Anyway, I BEGGED him for Timolol but he said he didn't feel comfortable prescribing it due to side effects and his limited knowledge of it and advised me to "wait and see." I said I didn't want to so he referred me to a pediatric dermatologist, but as of right now, I am waiting for my appt and am told they are booked until MARCH but are trying to squeeze me in. I don't know if this means they can squeeze me in next week, or squeeze me in in a few weeks, and obviously as I am sure you all know, time is of the essence!

I really feel like we are on the cusp of the big rapid, aggressive growth of these and everything I am reading says treatment is so much more effective if the H is still flat and hasn't grown a ton. I also read that by 3 months, most H's have grown 80% of their size, so again, I fear for what is to happen to my baby in the next 40 days before the 3 month mark.

I also found another "nick" on her face last night by her eye/nose and although my husband assures me it's just from her scratching herself, I can't help but be terrified that this is ANOTHER H.

Although I know these are harmless for the most part, I am reading about PHACES syndrome and people needing MRIs and ultrasounds to rule out internal growths and I don't know if this is something that needs to be looked into? (My pedi blew the whole thing off but how can I be sure? Especially for the one on her head?)

Anyway, I guess I am looking for advice on what to do if this referral ends up being months away instead of days. What should be my next step?

Also looking for opinions on growth - a lot of the research I've done shows H's much larger and raised by now than what my daughter's are. Is there a chance these really won't grow too much more or is that just a hopeless wish? I have also read people saying their's went from a mark to dime or quarter size in a matter of DAYS so I am just living every day with fear until we can get into the pedi derm.

I hope I don't come across as vain or anything but my heart just breaks thinking this lesion will be on her face for potentially the first five years of her life and potentially never really "go away" due to the fatty tissue residue. But at the same time, I am very very scared of the side effects I have read, particularly for the Propranolol, and so this is what makes me lean toward the Timolol, which I've read has a very good safety profile.

I am literally DESPERATE to get my hands on this medicine.

Thanks for listening.

I've attached some photos of the two H's.

This is taken at almost 8 weeks, and you can also see the "nick" I'm concerned about.

This is also taken at almost 8 weeks.
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  #2  
Old 12-14-2015, 04:36 AM
missy missy is offline
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Join Date: Apr 2006
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Hi and welcome!

Where are you located? I know we can find someone to help you. Although, sometimes monitoring the birthmark is perfectly appropriate, I think you would feel better if you had somewhere to go QUICKLY if the lesion were to start to grow.

I saw in the database that you had already sent questions to the experts. They will write you back promptly. If you don't hear anything in a couple of days, let me know.

Missy
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Old 12-15-2015, 04:34 AM
smurph smurph is offline
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Hi there! You are definitely at a difficult stage because it is so hard not knowing what is going to happen. It is easy to imagine all of the possibilities and think the worst. I have been there twice because two of my daughters had pretty significant hemangiomas. One daughter had treatment because hers was on her lip which ulcerated and interfered with her ability to nurse. My other daughter had one on her hand and wrist. It did not need any treatment and went away on its own by the time she was about 2. Both of them had pretty significant growth right away- every day for the first few weeks there was a lot of growth.

I think it is safe for you to take a deep breath and know that everything is going to be ok. It is a good sign that your daughter's hemangiomas have stayed small up to this point. It would be a good idea to take photos of it every few days to document growth. These pictures are often helpful at doctors appts. I agree with Missy that if you would like to get an appt at a specialist even if it is in March, then you will at least have someone to check in with if you start to see big changes. As for the fatty tissue remaining after the hemangioma goes away....I was concerned about that too on my daughter's hand because it was so puffy, but it is really not even noticeable at all! I can feel a little bit of sponginess to it, but it is a nonissue. I cannot imagine that being an issue with your daughter since it is not raised. So in my (non-expert opinion) I think it is safe to trust your doctor's suggestion to watch it for a while, with a readiness to act if you see any big changes. We are lucky to have different treatment options these days, but waiting for a while is also a really viable option (even though it is the hardest as the mom because we want to DO something!) Let me know if you'd like to see pictures of my daughters' hemangiomas. They were in different locations but it might give you an idea of how fast the initial growth was and how the involution process went.

Good luck! Let us know how it goes!
Shannon
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