At my wits end with daughter's hemangioma - Vascular Birthmarks Foundation Forum
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  #1  
Old 07-26-2013, 08:57 PM
tfee tfee is offline
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Unhappy At my wits end with daughter's hemangioma

My daughter is now 12 years old and has lived with a large strawberry Hemangioma on her cheek since she was several months old. Doctors have said for years it would go away on its own and now say that it won't. It is considered cosmetic and our insurance won't pay and we definitely don't have the money. I have tried to find a doctor to help with no success. Even the Facial Plastics Dept. at our local University hospital won't schedule an appt. w/ us because we have State Insurance. I am concerned for the emotional state of my daughter as she doesn't want to start middle school in the fall unless it is removed. She has suffered long enough not to mention the immense guilt I carry for it being there in the first place and then listening to all our doctors who told us it would go away on its own between the ages of 10 to 12. Any advice would be greatly appreciated.
Sincerely,
Frustrated Mom from Oregon
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  #2  
Old 07-27-2013, 02:20 PM
missy missy is offline
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Hi and welcome.

I suspect your daughter has been misdiagnosed. All hemangiomas do involute.

Begin researching vascular malformations instead. Those, by the way, are not cosmetic. They are also more difficult to treat.

Where in Oregon are you? Perhaps call the local university again, the facial plastics department, and tell them your daughter wasn't diagnosed correctly.

Missy
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Old 07-28-2013, 08:24 PM
tfee tfee is offline
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Thank You Missy for your reply. After much research I'm almost certain that it is a Hemangioma. It has involuted, yet what remains is still quite large and still protrudes. It has remained the same for approx. 4 years so I believe it won't involute any further. I am desperate at this point, she won't play sports(which she loves) because when she runs her hair blows away from her birthmark and she will only go swimming with family or very close friends. She can't change her hairstyle out of fear that people will see it more clearly, she has never even worn a ponytail. I of course could go on forever about the limitations she places on herself. She is extremely bright, her teachers adore her and her positive attitude and she is an honor roll student. She possesses a remarkable kindness and compassion for people and animals. She deserves the same opportunities for growth and happiness as any other child and I fear that won't materialize for her with this birthmark holding her back. I will attempt to attach a photo although this is not a very good one. (The only one I currently have on my phone)
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Old 07-29-2013, 12:55 AM
missy missy is offline
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My apologies! I thought you still were dealing with the underlying vascular problem.

Perhaps you should get in touch with our insurance expert at
Http://birthmarks.org/experts.php

She might be able to help you get it covered, even with state insurance.

Missy
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  #5  
Old 07-30-2013, 06:40 AM
tfee tfee is offline
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No apology needed, I'm just frustrated. I really appreciate you taking the time to reply! And the information!
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Old 07-31-2013, 02:52 AM
smurph smurph is offline
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Hi there!
My heart goes out to you and your daughter. That must be so hard for her, especially after you waited all this time and didn't get the result you were hoping for. I'm not sure where you are in Oregon, but this physician is listed on the VBF website:
Dr. A. L. Krol MD FRCPC
Director of Pediatric Dermatology
Doernbecher Children's Hospital
Portland Oregon, 97239
For Appointments call 503 418-3376

I didn't know if you had tried to call there at all. I also recommend emailing Basia Joyce, the Insurance expert. She might be able to figure out a way to get things covered. I was worried our insurance would not cover my daughter's surgery and laser to get rid of the leftover involuted hemangioma but it did (and my daughter was on state insurance at the time of the surgery if I remember correctly.) Every state might be different, but you never know- you might be able to appeal, etc. Let us know if you are able to get anywhere! I hope so and I'll be thinking of you!
Shannon
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Old 08-10-2013, 06:36 PM
tfee tfee is offline
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Hi Shannon, sorry it took awhile to get back, I was helping my mom through a hip replacement. Your kindness brought me to tears, I guess my emotions are a bit hyper sensitive with all this right now! Haha Thank You for the info, we have seen Dr. Krol. he is very kind. He gave us a referral to the OHSU (Doernbecher) plastic surgeon yet it took so long to be scheduled in that by the time the appointment came around the facial plastics office didn't take our insurance anymore. They wouldn't even schedule a self pay appointment!!??? Which I was shocked to hear. Dr. Krol's office is supposed to be working on a different referral but it's been one flub up after the next with them. Not calling me back, issuing a referral to an ear, nose and throat doctor, and people working on said referral being on vacation and never calling me back, etc. I feel like I'm getting the run around. Honestly not sure how much more I can take. I guess I will try to contact Basia Joyce and keep my fingers crossed and my head up as high as I can get it!? Thanks again, Tanya
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Old 08-12-2013, 04:20 AM
smurph smurph is offline
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Tanya, I don't blame you! I would be so frustrated-I'd be going crazy! This might be a silly question because I'm not an insurance expert, but do you NEED a referral from Dr. Krol, the pediatric derm to go see the plastic surgeon?? Or would you just need a referral from your primary care? It seems to me like 2 different specialties-wouldn't the referral come from your pediatrician? So maybe that might be an avenue to pursue.

Ok, now this might be a long shot- but in October there will be the Vascular Birthmark Foundation conference in Irvine CA. I have lived in Massachusetts and NH my whole so my west coast geography is not so great, but I'm sure that it is quite a long distance for you. The only reason I am mentioning it is that the top docs in the field will be at that conference and VBF offers free lodging and free clinic appts with the doctors there...and I'm thinking what an amazing resource that would be for you and your daughter if there is any way possible for you to get there???? There are support groups and opportunities to meet with the insurance specialist, etc.

If that is not possible, you can also email the expert (Dr. Levitin) here on this site and send a picture of your daughter's hemangioma and he will give you his opinion...it might give you some helpful info and at least get you started in the right direction.

Stay in touch and check back in- If I can think of anything else I will post here. Hang in there!
Shannon
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Old 08-12-2013, 05:15 AM
tfee tfee is offline
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Shannon
I know Irvine, CA and I would/will find a way to get there. It sounds like an amazing opportunity for her and for me! I did get a referral from the Ped. to see Dr. Krol and he said I needed the referral to the surgeon. I will double check on that. I will be busy tomorrow looking into all this! I can't thank you enough for your time and helpful advice.
Much appreciated!
Tanya
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  #10  
Old 08-12-2013, 01:38 PM
smurph smurph is offline
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I would be so happy if you could get to Irvine! It is meant to help people just like you!! All the info is here. Just go to the home page and look on the right where it talks about the VBF conference. I would register ASAP. I think there were not many free hotel rooms left. Also, there is also an opportunity to waive the registration fee for financial hardship- look at the section on the registration page down on the left. You need to do that by phone, if you are in need of doing that. Please let me know if you need any help. I will be away till Wed. but Missy can also help you on here too! Yes, and check into that referral thing- maybe you just need the referral from your pediatrician and not from the specialist. That's what we had to do!
Shannon
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