5 weeks old, not sure what to do

jma2chi · #1 03-10-2012, 01:07 AM

I have read a lot of threads here trying to get some information. I emailed Dr. Levitan yesterday morning, but still waiting for a response.

I went to see the ped derm 2 days ago who confirmed what I already knew, that my daughter has a hemangioma. It is located on the bridge of her nose, but close to her eye. In the last few days I have noticed more growth and I'm concerned about a spot that i think might be getting a lump under it. They want to do the "wait and see" approach before doing any treatments. I am not really comfortable with that. (My derm made me feel like a terrible mother for even suggesting treatments! She gave me no options or information. Told me to stop looking on the internet...) I made another appointment with a different doctor, same hospital. That's not until March 27th though.

So my question for any of you with experience is how long did you wait before doing treatments? Did you wait until the growth was really large? Did anyone do treatments this early? I'm just looking for any information at all about young babies and any types of treatments. I'm about 2 hours from Philadelphia and wonder if I should go to a specialist because of the closeness to her eye.

I tried to post a pic but couldnt get it small enough.

smurph · #2 03-10-2012, 05:06 AM

Hi there! I think it is definitely a good idea to go see a vascular birthmark specialist to at least hear what your options are and have it monitored. There are new treatments now that can help and it may be best to catch it sooner rather than later. Your post brought back memories for me, because of a similar experience we had with our pediatrician. Our ped. and our specialist were saying two different things and we were totally stuck in the middle and did not know who to believe. It was awful! The ped. kept saying to just leave it and that it will go away eventually. He said that the specialist was only concerned with her lip and not her whole body. When I complained that she had sore on her lip he insisted it didn't hurt and just told us to put vaseline on it. A few days later we were dealing with a raging ulceration and a child who wouldn't eat. I still felt like a terrible Mom though for giving her the steroids because I was so afraid of doing her permanent harm. We ended up going with the Specialist's advice from then on and eventually got a new Pedi. In my opinion, I think it's a good idea to get a second opinion and then you can go with what you are most comfortable with. 3 of my 4 daughters have hemangioma. One had medicine, surgery and laser (lip). The other two had no treatment at all and they are going away on their own (hand, arm). So it is possible. Looking on the internet is scary because it usually shows the worst possible scenarios. But I have also learned a lot by researching on the internet, so becoming more educated about hemangiomas is a good thing because it can help you to ask questions of the docs and know more what to expect. Sorry I'm rambling! It's 1 am here and I'm zonked!! I'm in the middle of cooking meatballs for my daughter's b-day party and they are not going to be done until 2am! So I'm killing time online!

Let me know if you would like to see any pics of my daughters. I'd be happy to share. It would be great to see pictures of your daughter too.

Shannon

ruthless009 · #3 03-12-2012, 02:04 PM

I've seen where kids on the babycenter support group for this used proprananol and had good results with it. I concur with the earlier post to find a specialist. They didn't start treatment on my son til 18months the proprananol didn't work so we're stepping it up. But see if they will at least start that.

jma2chi · #4 03-13-2012, 01:06 AM

How can I resize a picture to post here? I have tried everything, and I have had no luck.

smurph · #5 03-13-2012, 02:39 AM

I'm sure Missy will chime in here, but you can send pictures to her and she will post them. If you click on her name....you will see that you can send her a private message.

shannon

missy · #6 03-13-2012, 11:22 AM

If you will email the photo as an attachment to contact@birthmark.org I will be glad to resize it and post it for you.

I love baby pictures!!!

Missy

KatieG · #7 03-13-2012, 07:44 PM

First of all, take a deep breath. We have all been there and its so overwhelming.

If you don't want to wait and see, then don't. You can email a specialist or even go see one. If its near her eye, I think it needs to be seen by a specialist ASAP.

We see Dr. Waner in NYC and I emailed him before we ever made an appointment and he gave me his opinion. My daughter had an H on her scalp that was quite large. Showed up when she was 9 days old and we had it removed when she was 4 months old. Email me if you have any questions or need to talk it out: katiegalvin02@yahoo.com

missy · #8 03-14-2012, 11:25 AM

Here's photos:

My *opinion* is that it should be evaluated and monitored by a specialist. Right now, this is a small hemangioma, but they can grow very rapidly. Also, since it is near her eye, the location is critical.

If you wait to see someone and it does grow, you don't want to be waiting for an appointment as a new patient. You want to have someone to call where you will be able to get in faster and already have a relationship established.

Missy

jma2chi · #9 03-14-2012, 05:48 PM

Thank you for posting my pictures! I know the H is relatively small right now... but my fear is that it will just keep getting bigger and interfere with her eyesight. I can see subtle changes in it daily. I am going to start making some phone calls and hopefully can get in with a specialist soon.