Vascular Birthmarks Foundation Forum

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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   New here, 1 mo. old baby w large Hemangioma (http://birthmark.org/board/showthread.php?t=5312)

twinmommy 04-28-2011 07:36 PM

New here, 1 mo. old baby w large Hemangioma
 
Hi all,
I am glad I found this site.

My twins were born Apr 2. One of my girls had a small h. that is on her left cheek. She was born 4 wks early so she is small. The h. has grown large, encompassing her whole cheek, is very dark red, and is bumpy.

Her pediatrician saw her 2 weeks ago, and said it'd go away over time. I am very concerned as it is very close to her eye. I already notice her favoring that eye and often only opens her other one.

The ped. mentioned sending her to an eye doctor if it got closer... I'm just really upset as it is growing fast and I don't want this little angel to have to deal with a large scar her whole life.

I would also like to know, do they all ulcerate? What are the signs of ulceration, I know that happens when they grow fast.

Our insurance is anthem and HMO - and something tells me they won't send us anywhere cutting edge to deal with it. We don't have the money to spend out of pocket to see a specialist either. Not sure what to do.

twinmommy 04-28-2011 07:41 PM

Attached is a picture from last weekend. It has gotten thicker and bumpier since this then.


missy 04-28-2011 08:26 PM

Hi and welcome!

Gorgeous baby!

Tell me where you are located. You do need to be seen by a specialist, and sooner rather than later. If you could find someone to see, do you think your ped would give you a referral? Call Anthem and ask them the proper route to go if you disagree with your primary physician and can't get them to give you a referral.

Ask Basia insurance questions via our ask the experts page:
http://birthmark.org/experts.php

Missy

twinmommy 04-28-2011 08:35 PM

Hi Missy, thanks for your reply. I am in So. California in Long Beach. I used the ask an expert to post a question to Dr. Nelson regarding it being so close to the eye.

I am sure the pediatrician would be on our side if we really wanted a referral. It is def. darker than when she saw the girls last. Would I be asking to see a derm. or an ophthalmologist?

twinmommy 04-28-2011 08:36 PM

Quote:

Originally Posted by missy (Post 23128)
Ask Basia insurance questions via our ask the experts page:
http://birthmark.org/experts.php

Missy

ps What is basia insurance?

smurph 04-28-2011 10:34 PM

Hi there! First of all, congratulations on the birth of your twins! I have 2 year old twin girls too! They were born 5 weeks early. They are a joy! Life is really crazy but it is amazing! 3 out of my 4 children have had hemangiomas. My 6 year old has one on her lip and she received treatment from an early age mostly because it was growing so fast and her lip was ulcerating. One of my twins had a pretty significant hemangioma on her hand/wrist...she ended up needing no treatment and it has been going away on its own. In my opinion, since your daughter's is on her face and has grown so much in such a little time I would definitely go to the specialist right away. Most pediatricians tend to be more on the "wait and see" side of things, but there is a lot more that can be done these days in the way of early treatment that could potentially save children from more serious treatment later like surgery, etc. At the very least, you will be able to hear all your options and have it closely monitored by someone who deals with these on a daily basis. That's my two cents! Good luck with your twins! I hope you are getting some rest although I'm sure sleep is probably very, very little!!! I'm sure the fact you are dealing with this hemangioma adds more stress to your day, especially since you have preemie twins. You will survive!! I did! :) Let me know if you want to chat more about twins and hemangiomas and maybe we can connect on facebook!

shannon

smurph 04-28-2011 10:35 PM

By the way, Basia is the name of the woman on this site who deals with insurance and appeals and stuff like that. She is very helpful in terms of asking questions, etc. You just email her and she'll get back to you. (Look under Ask the Experts I think)
shannon

twinmommy 04-29-2011 01:01 AM

Thanks for clarifying Basia, that made me laugh a little, I thought it was a type of insurance I hadn't ever heard of.

Sleep deprivation, yessssss, that is me. But they are so worth it. After trying for so many years I feel blessed no matter how little sleep I am getting!!

I'm going to call the insurance company and also launch an email to the pediatrician. I am anxious to see if Dr. Nelson responds to my 'ask the expert' inquiry. We are about 30 mins from his clinic. Being on maternity leave half pay and all the $ that has flown out of our hands of late, I am concerned about doing anything that is not via the insure. I am also paying 400/mo while on maternity leave to my company for their insurance.

smurph 04-29-2011 01:59 AM

Hopefully your pedi will just give you the referral and then you can just make an appt to go see Dr. Nelson. As for the insurance at that point, usually the doctors have a way of coding it so that it will be covered, especially on the face..but I'm not 100% sure. Over the years we have had Blue Cross, Medicaid and Harvard Pilgrim at various times and everything has always been covered with no problems. My daughter had steroid treatment, surgery and laser and we never had a problem. So hopefully you will not as well. Again, Basia is a great resource in this area. Keep us posted! She is so adorable!

shannon

missy 04-29-2011 11:18 AM

Dr Nelson is good at writing back. If you don't hear back in a couple of days, let me know. Every once in a blue moon, a doctor goes out of town or has a situation where they can't answer promptly and they forget to tell me.

LOL at Basia! When I read back over it, I realized I was not clear at all. Sorry!

Missy


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