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-   -   What to do?/No specialist in area (http://birthmark.org/board/showthread.php?t=2778)

AK Mel 02-19-2008 07:43 AM

What to do?/No specialist in area
 
My 14 week old daughter has a hemangioma on her upper lip. Her pediatrician's advice is to wait and watch. I am wanting to seek a second opinion but there is not a vascular birthmark specialist in the state of Alaska. What type of physician would be the next best choice to evaluate her? It does not seem to have grown in the past month. Do hemangiomas have periods of rest and then begin growing again? Thank you for any advice! Mel

Taryn9_25_07 02-19-2008 07:18 PM

My daughter has a hemangioma on her lower left lip. We are seeing a dermatologist that specializes in hemangiomas. Our pediatrician referred us to her after Taryn's lip got an ulcer. From what our doctor said is that the first four months is the rapid growth phase for the hemangioma. We were also told that it should be done growing around 10 months. Because it was causing her pain because of its rapid growth she is on a cortisone steroid.

ccsmith312 02-21-2008 02:52 PM

Hi Mel! My daughter also has an upper lip H. Hers has grown rapidly and began to interfere with her feeding. We are seeing Dr. Waner in NYC and are very pleased with her progress. Next week is our excision surgery!

I would look into seeing a specialist. From my understand upper lip H's don't always involute completely and can be disfiguring long term. Not trying to scare you, just what I have learned in my research about them. We also did not have a specialist in the area so traveling was our only option. It's not ideal but the offices work with you by using email to communicate and sending photos over the internet to get their opinion.

Ella's started growing at 2 weeks and has had periods of rapid growth lasting a few weeks to more plateau phases where it didn't grow for a few weeks more. Overall though it is huge compared to when she was just a couple of weeks old. She is almost 6 months now.

Good luck and email me with any questions or if you would like to see pictures.

nickbar 02-24-2008 07:00 PM

I would encourage you to seek the opinions of our ask the expert Dr. Levitin. He can give you a good idea (if you share photos) on what might be options for your child. I am sorry I do not have doctor listed for Alaska...but if you are willing to travel...based on what options might be available to you...would you be able to go to Seattle? Dr. Perkins at Seattle Children's Hospital is very experienced in treating hemangiomas.

If you have any questions please feel free to contact me.

Corinne

renee 03-10-2008 03:31 AM

Are you aware of Hadi Shrine? Their services are free and may even pay for your travel to a specialized hospital for hemangiomas. It is worth looking into. Here is alaska's site. Grand Lodge of Alaska http://www.alaska-mason.org
We are going within the next couple of months to have a second opinion on my daughters left lower lip hemangioma. It does take a while to get the ball moving with them though so have a back up ready.
Renee

Rachel06 03-10-2008 11:22 AM

Mel - this can be such a scary time. Good for you that you are trying to get another opinion and make sure all the bases are covered. I think I can help you - at least to obtain a second opinion. E-mail me privately and I will explain. I am also happy to share my daughter's photos - no lip h - but extensive aggressive hemangiomas with a successful end result. I look forward to talking to you and wish you well. sherrirfoster@sbcglobal.net

AK Mel 04-02-2008 04:03 AM

Quote:

Originally Posted by nickbar (Post 14492)
I would encourage you to seek the opinions of our ask the expert Dr. Levitin. He can give you a good idea (if you share photos) on what might be options for your child. I am sorry I do not have doctor listed for Alaska...but if you are willing to travel...based on what options might be available to you...would you be able to go to Seattle? Dr. Perkins at Seattle Children's Hospital is very experienced in treating hemangiomas.

If you have any questions please feel free to contact me.

Corinne

My husband and I e-mailed and sent pictures to Dr. Levitin almost a month ago from my husband's e-mail address. Could you please find out if he received it. I will send you an e-mail from his address, so you'll have it. Much appreciated and thank you. Mel

nickbar 04-03-2008 07:39 PM

I emailed you. Did you receive it?

Corinne

Rachel06 04-04-2008 09:26 PM

Hi Mel. I wish you well on your search for treatment. I am happy to help in any way I can. Feel free to e-mail me privately sherrirfoster@sbcglobal.net.

Hope to hear from you.
Sherri


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