just diagnosed with Hemangiomas at 8 wks - Vascular Birthmarks Foundation Forum
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  #1  
Old 10-30-2011, 09:37 PM
julia_ellin julia_ellin is offline
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Default just diagnosed with Hemangiomas at 8 wks

Hi All,

I am new to this group as of today. I'm so glad that there is such a wonderful community people and resources such as this. My daughter Eleanor was just diagnosed last week with two hemangiomas: One near her right eye, and the other on her left armpit. The one near her eye is bright red and seems to be growing everyday. The one on her armpit is about the size of a nickel and blue in color with a few red specks in it.

My daughter is 8 weeks (born 9/2/11). As so many of them do, her hemangioma started to appear around 2 weeks old. It has progressively gotten darker, and slightly bigger. It's maybe a 1/2 inch away from her right eye. My concern is that if it grows much bigger that it will interfere with her eye, and after doing some reaserch, it sounds like it's better to treat these while they are still flat and small. Our pediatrician has recommended that we take the "wait and see" approach before she refers us to a pediatric dermatologist. I wanted to ask your opinion (if i may) on whether we should after all take the wait and see approach, or if we should consult with a specialist as soon as possible. Have any of you seen a hemangioma similar to this? Is there a way to determine how big it will grow? We are located in Portland, OR and have Kaiser insurance. Our pediatrician wanted to wait to refer us to a pediatric dermatologist (i hate having to deal with referrals) which makes me mad, as i'd like to get in to see one ASAP.

I also wanted to ask your opinion on the use of Timolol as a topical treatment. Is this effective in slowing the growth of a hemangioma? Does it have any side effects?

Thank you in advance for any advice you have for us.

Julia
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  #2  
Old 10-31-2011, 10:52 AM
missy missy is offline
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Hi and welcome!

My suggestion would be to go ahead and get a referral. I would be afraid that if it grew, it might grow fast. The last time I had a referral, there was a long wait. I'd rather see you with a consultation, so that if you needed a specialist, you weren't a "new patient."

So ... both. With one that size, I would wait and see, yet be prepared to move quickly.

My opinion means squat, though!! Other parents will be around soon.

Missy
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  #3  
Old 10-31-2011, 05:14 PM
KatieG KatieG is offline
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I would go ahead and get the referral. For now the one looks far enough away from her eye so it won't cause a problem, but if it goes through a phase of rapid growth, you will want to see someone right away.

good luck! It's not as scary as it seems and plenty of us have been there!
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  #4  
Old 11-05-2011, 04:42 PM
nickbar nickbar is offline
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Please feel to email me. I would highly recommend trying to get a referral out of network to see Dr. Krol at OHSU. Also, because this is near the eye, I would recommend seeing a specialist at Casey Eye Inst. Dr. Ng if he is still there is fabulous!
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  #5  
Old 11-08-2011, 01:25 AM
julia_ellin julia_ellin is offline
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Thanks everyone. Her Hemangioma has only grown a little bit over the last 2 weeks. I'm not sure if that's a sign of anything good. We were able to get a referral to a pediatric dermatologist, but have to wait until December 2nd to see someone. I'm hoping to get an out of network referral to OHSU to see a specialist there. Any words of advice on getting a referral out of network?

I've also gotten some great feedback from Dr. Geronemus and Dr. Levitin who both suggested early laser treatment. Does anyone have experience with their baby getting treatment so young? What were the laser treatments like? How did the baby do?

Thanks!

Julia
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  #6  
Old 11-08-2011, 02:28 AM
smurph smurph is offline
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Hi there! Just wanted to chime in and say that it seems great that it hasn't grown very much. Hopefully that's a good sign. I have 3 daughters with hemangiomas...2 of them were fairly big and grew pretty fast during those early weeks. One of them had treatment because it was on her lip and it had ulcerated. She was on oral steroids as baby and then had surgery and laser when she was in Kindergarten. (She is 6 now.) The other one didn't need any treatment at all (although it grew pretty huge) and there weren't any complications. She is 2 1/2 now and it is practically gone. My other daughter had a small one on her arm and it grew a little at the beginning and then pretty much stayed the same for a long time.

I think you are in good hands with the doctors you mentioned. I also think it's good that you are asking lots of questions and if it doesn't seem to be interfering with her eyes or ulcerating or causing any problems it might be ok to wait for a while if you would prefer her not to have the treatment at such a young age. I think it's great to find out as much info as you can, get the advice of the doctors and then go with what you think is best. Sometimes you can get conflicting opinions which can be confusing. I always used to get stressed about trying to make the "right decision" but then my daughter's pediatrician told me that there is not ONE right decision to make and that she will be fine either way, whatever you decide. That really kind of took the pressure off a bit and helped me feel a little better when trying to figure out what to do.
Hope that helps?! Good luck with everything! You are not alone! We have all been there...heck, I've been there 3 times!! This forum is the best place around for support. I'm glad you found it!

Shannon
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  #7  
Old 11-08-2011, 11:52 AM
missy missy is offline
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Quote:
I've also gotten some great feedback from Dr. Geronemus and Dr. Levitin who both suggested early laser treatment. Does anyone have experience with their baby getting treatment so young? What were the laser treatments like? How did the baby do?
Usually, the babies do fine and the parents fall apart!

Physicians say that laser feels like a rubber band popping against the skin. I won't say it doesn't hurt, but it is more of a discomfort than lasting pain. Afterwards, there can be bruising and swelling, and THAT can just LOOK awful, even though most children do well with it.

Keep in mind: most early intervention will save the child from a harsher intervention later.

Shannon is right; there is no ONE right decision.

Come back and let us know what happens!

Missy
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  #8  
Old 11-10-2011, 04:44 PM
julia_ellin julia_ellin is offline
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Thanks everyone. I really appreciate the feedback. My first concern is that the pediatric dermatologist won't want to do early laser treatment, and will suggest the "wait and see" approach like our pediatrician. After doing a lot of research and talking to Dr. Levitin, and Dr. Geronemus it seems like early intervention with laser is the best option. Has anyone had to deal with this situation? How did you convince the Dr. that treatment was the way to go?

I think my only hesitation with my daughter getting treated is that she will need general anesthesia. For those of you that have gone through this, did your baby need general, local or nothing at all?

So glad to have found this resource!

J
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  #9  
Old 11-12-2011, 11:37 AM
KatieG KatieG is offline
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My daughter has had surgery and laser treatment. I actually found the laser surgery to be quite easy. I think she was only under for a total of 5 minutes and woke up happy as a clam! It wasn't as stressful as the surgery was for me where she was under for over an hour.
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  #10  
Old 11-13-2011, 02:29 AM
nickbar nickbar is offline
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My son started laser at 4 months old. It would have been sooner if he did not have to be weaned off of steroids first. I do know that Kaiser in Portland has referred out of network for these cases. Dr. Krol does do laser and depending on the size of the hemangioma he may not put her under g.a. It is a very quick procedure (15 min.) typically and Dr. Krol has extensive experience. He was just starting to do laser 8 years ago on hemangiomas (previously just pws), so my son was treated by a different doctor. We ended up going to Seattle Children's Hospital for some of his treatment.
The best advice I can give you is to talk with your primary and derm within Kaiser. Ask them to agree to talk with Dr. Krol or any of the VBF experts on how to best approach a hemangioma near the eye. Quick response can eliminate more drastic intervention or reduce the intervention needed. Try to find someone within the Kaiser system to be your advocate for a second opinion at OHSU Vascular Malformation and hemangioma clinics. Feel free to email me if you need any help.
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