Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   New-2wk old daughter w/hemangioma on upper lip. (http://birthmark.org/board/showthread.php?t=5330)

heavenly3mm 05-12-2011 05:27 AM

New-2wk old daughter w/hemangioma on upper lip.
 
First of all I'm so worried and protective of my baby girl that it hit me real hard today and am so concerned as to how my little girl is going to get treated once she reaches school, as I know how cruel some children can be. Any advice helps. I believe it is a hemangioma I see my pediatrician tomorrow and I'm hoping to get a referral to see a dermatologist and start the process of getting it fixed before it starts to progress. I am concerned they are going to tell me the, "wait and see.." like I have read in some of the other forums. I just want to know that is it ok to start treatment before it starts and what other advice any other parents can give me from their experiences. I got medicaid and I was wandering if that covers most of it or all of it? Whats the first step that take? :confused: HELP!!!

missy 05-12-2011 11:07 AM

Hi and welcome!

The first thing to do is to see the physician and find out what they know about vascular birthmarks and if they are willing to refer you. I think you're right to be proactive, but remember to ask lots of questions. It is OK if you ask things like, "how many of these have you treated and what were the outcomes?" and "are you familiar with new medications that are being used to treat these?"

Ask lots of questions and make sure you get the answers! Take in a list of questions if you have to, so you remember.

Let us know how things go!

Missy

carley09 05-12-2011 04:18 PM

Hi and welcome! Take a deep breath! I have been in your shoes just 16 months ago! My daughter also has a hemi above her left lip! It was not there at birth but appeared two weeks later! Thankfully our pediatrician referred us to a Pedi derm! It has been a long journey for us so I know how you feel, I know your concerns about other kids possibly picking on your baby girl when she gets to school age..... What I have learned now from her current dr is "hemi babies need to be seen on the way home from the hospital, Early intervention is key! My daughter was on propranalol from 8 weeks old until
1 yr! It definitely halted the growth which was the goal! We are currently doing laser treatments, hoping Saturday will be the last one! Hind sight is 20/20 but I wish we would have started laser from day 1! The results are amazing! Dr Geronemus on here can help you find a great laser dr in your area! Lasers are good so long as they are in the right hands! Best of luck to you! If you have any questions please don't hesitate to ask!!

Carolyn

nickbar 05-13-2011 03:52 PM

First step, Where are you located? It would be a good idea to have your primary physician refer you to a specialist (please let me know if I can help you identify someone closest to you). It is important in my opinion to have a few opinions so you know your options and then go forward with what fits your instincts. Insurance can be an issue...but with the right approach, it can be done. VBF has great resources for getting approvals.
As far as concern over how other children will treat her. Children typically react out of fear... they don't intend to be mean...but the unknown scares them and they don't know how to hide it or it comes out as being rude. THe best advice I've heard over the years is to treat your child like he/she is perfect...anyone else has the problem... your child will pick up more self awareness from how your react vs. the general public... One great tool for helping calm a situation and impower your child is to have them or you educate those you come into contact with. We have had a number of parents tell us that they've gone to school and talked with their child's teacher... then presented to the class the information about "hemangiomas or malformations"... kids respond very well to their peer telling them in their words what is on their face, etc. In fact, once they are educated they tend to be the most supportive and good advocates. Please feel free to email me.

smurph 05-19-2011 02:18 AM

Hi there,
I was in your shoes 6 years ago and it seems like yesterday. It's so stressful. 3 out of 4 of my daughters have hemangiomas. We only needed to treat one of them. She has had steroid treatment, surgery and laser...but my other daughters' are totally going away on their own. So I think the best thing to do is see a specialist and hear what your options are and then follow your instincts. So we have done both, intervention and "wait and see" and there are pros and cons to both. It depends on what's going on with the hemangioma.
As for school, I worried for years about how things would be when she got to pre-school/kindergarten....and it has pretty much been a non-issue. (She is in Kindergarten now) Towards the end of this year is the first time she has started to be a little self-conscious...but mostly because she recently had laser treatment and she had some bruising for a couple of weeks. Over the past few years a couple of kids would ask her about it and she would just say it's her birthmark and it wasn't really a big deal. I found my years of worry/anxiety about it far outweighed the reality of the situation. I did explain to her teachers in advance about her hemangioma and that always made me feel better. And I told them if there was ever any issues to let me know and so I felt like there was always someone looking out for her at school. We have never had a problem, so try not to worry about that too much right now...I laugh at myself as I type this because I know it can be impossible not to worry sometimes!!! :)
As for the insurance, we have had both regular insurance and medicaid over the years and we have always been covered for everything, so it is possible. :)
Hope you start to get some answers..just do lots of research, ask lots of questions and keep us posted! Good luck!
Shannon

vlier 06-18-2011 01:59 AM

I am in the same situation. My son has a hemangiomia on his lip. The odd thing is that the hemangiomia is not getting swollen and raised, it looks like it is caving in. Is this a bad sign or a good sign. I would like to see a picture of your daughter's lip to compare the two.

smurph 06-18-2011 06:57 PM

Hi there! This is for the most recent message (not the original post) Do you have a picture you could post? My daughter's lip hemangioma grew but then when it started to ulcerate some of it looked a bit "caved" in like you mentioned. I guess it's kind of hard to tell without seeing it. Have you been to a specialist at all?
shannon

vlier 06-19-2011 04:51 AM

For smurph,
I tried to get a picture of my boy but he was moving around too much. The hemangioma started to bleed but has stopped and is now caved in. the hemangiomia is small is only on his lip. The doctors said that it caved in due to the fact that he is now bottle feeding and the hemangionma is taking the shape of the nipple of the bottle. He does fine when he is feeding and the hemangioma does not appear to cause him pain even though it bleeeds sometime. We are going to see a dermotologist on Monday. What happened when your daughter's caved in. One doctor said it was a bad sign because it could cause his lip to look like a clef lip and another doctor said that it was a good sign because it was healing? Any thoughts?

nickbar 06-20-2011 04:25 PM

It would be a good idea to check with Dr. Levitin via ask the expert to check on what you find out today. If you can get picture that is helpful too.

Let me know if you need any help.

soniya 06-28-2011 06:23 AM

my liitle baby has hemangioma on left side of nose and below eye. it was not from birth but after 2 weeks the size was very small has grown up to one month but now the size is constant. She is 4 months old now We have consulted many doctors but all of them are saying that it will go away by own, wait for 1 year?
but i have heard in many cases it will not go? pls give some suggestions


All times are GMT. The time now is 10:53 PM.

Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.