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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Hi all, I'm new, and on a mission!!! (http://birthmark.org/board/showthread.php?t=2817)

EJsMommy 03-14-2008 09:48 AM

Hi all, I'm new, and on a mission!!!
 
1 Attachment(s)
Hi everyone,

My name is Cristine, and my daughter's name is Eva. She has a Hemangioma on her forehead, above her right eyebrow. My husband and I are stationed overseas (guam) and have had no success in obtaining treatment for her Hemangioma. Same ol' story "itll go away". Well, she is now 4 months and it just keeps growing and growing and it is putting pressure on her eye.

I have spoken with Dr. Waner's office, and they are more than happy to treat her. My insurance won't cover treatment, but I'm willing to do whatever it takes so that Eva (EJ) will have a normal childhood :)

I am also in the process of seeking consultations from other doctors via email, to see who I feel would be best to perform this procedure on my daughter.

If anyone would like to share their story of surgical removal of the Hemangioma, I'd love to hear it. I am nervous about the surgery, and my pediatrician told me that Anesthesia on an infant will kill her. WHy did she say this? I mean, I doubt so many parents would be seeking excision of Hemangiomas if there was a risk of death. So scary to think of what docs will do to keep you from making things happen yourself! :(

Thank you to all for any advice and encouragement you can provide!!

lpm 03-14-2008 10:30 AM

I think that the GA comment was probably just meant to discourage you from seeking surgery. As you know, there are plenty of infants that undergo surgery - I don't think that would be the doctor's statement if the child had a life-threatening condition.

I guess that at this point you could see if anyone would do a steroid injection or prescribe oral steroids. This might help to slow/stop growth, as many doctors, even aggressive ones, might hesitate to operate on a child under 6-8 months (unless surgery is very urgent). Also, has she seen an ophthalmologist to confirm that there is pressure on the eye?

As for why doctors discourage you from seeking surgery - most hemangiomas remain relatively small and will involute reasonably well, and many doctors are looking to cover their behinds (if they support surgery that is not absolutely needed, and something goes wrong...you get the picture).

Good luck in seeking treatment.

mmarrari 03-14-2008 02:54 PM

2 Attachment(s)
Hi Christine,
Eva is adorable! My daughter also had/has a H on her forehead/eyelid that grew to put pressure on her eye, actually it was very similar to Eva's. She developed severe astigmatism so we tried different things. My ped was the one pushing for surgery (unusual, I know) and I was very scared (she was 3 months old) so I pushed to see a ped derm who also gave me the option of surgery or trying steroids. We went the steroid route. Valentina was on them for 9 months. Her H responded very well and not only did it stop growing but also shrunk considerably. Unfortunately her vision did not improve (the hemangioma was sitting on her globe inside her eye cavity and putting pressure still) so we had no choice but to have surgery. She had a first surgery at 13 months old, which was a partial excision. Unfortunately the H grew back and the astigmatism got worse again, so she had a 2nd surgery with Dr. Waner at 15 months. This time all the deep H was removed and so far (4 months later) everything is well. I also consulted with several specialists via email. Its great that you are putting all your options on the table and making an informed decision. The GA comment is a really unfortunate one, probably just trying to scare you so you don't go ahead with something she doesn't agree with. I have also found that Drs sometimes don't respond well when you do your research and have a different opinion than them. They feel challenged and some might not handle that well. There is always risk of complications with GA, and although slim, that is one decision you will have to make.
Regarding insurance, my ins. did not cover Dr. Waner either but I requested an out-of-network authorization (or non-par referral) and after a few appeals got the referral. It is something you might want to try. I will be happy to share my requests and letters with you.
Good luck and let me know if I can help you in any way.
Marina, Valentinas mom
PS. I am attaching a pic before any treatment and a current one.

EJsMommy 03-15-2008 02:13 AM

Wonderful!
 
Marina,

Your daugher looks absolutely wonderful!!! Her hemangioma is very similar to Eva's, too.

I am in the process of writing a letter for out of network treatment. This is all such a headache, but will be worth it in the long run!

Thank you so much for sharing, again, your girl looks absolutely stunning.

pdxgurl 03-17-2008 03:23 AM

Hi Christine!

I'm new here too. I also have and Eva with a hemangioma. My Eva is 18 months old an her hemangioma is above her left eye. We just got the OK for surgery a week ago. We tried the steroid treatments and had little success. I would be glad to share about the surgery when it happens in less than a month. But for now, I wish you good luck!


emonaco 03-17-2008 04:42 AM

Hi! Your daughter is so cute. My daughter Sophia just had her hemangioma removed surgically from her right eyelid and she did fine. There are many other positive stories on this site as well. She was exactly five months old. We met with at least six different specialists (opthamologist, dermatologist, etc...) during the first three months of her life and everyone said the same: wait and see. Our ped was actually the most worried about her having surgery and was very opposed to it. In our heart of hearts, however, that was what we wanted - to remove her hemangioma once and for all! Finally, we found this site and learned about Dr. Reinisch in Los Angeles where we live and he said he could remove it. He is our life saver! I was nervous but it has been the best decison we ever made. Sophia can now see out of her right eye and it is as if she is a new baby after the surgery.

I would say, go with your instinct and if it is actually putting pressure on her eye, there is a chance your insurance might cover it to have it removed.

Best of luck to you! Ellie

EJsMommy 03-17-2008 07:15 AM

Chla?
 
Hi everyone,

I am wondering if anyone has worked with Children's Hospital Los Angeles. They offered to treat my daughter as well, and depending on the outcome of my insurance request, I may consider going there. Although I am excited to see Dr. Waner.

Anyhow, if anyone has had treatment at CHLA, please let me know your experience...thanks!


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