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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Educating Doctors on Treatment Options for Hemangiomas (http://birthmark.org/board/showthread.php?t=2744)

MOLLIE 01-22-2008 03:43 PM

Educating Doctors on Treatment Options for Hemangiomas
 
My name is Mollie and my husband is a physician (foot and ankle). Our daughter has a H on her forehead. Our pediatrician told us the same thing "wait and see". She never really even told me what it was or what would happen. The only thing she said is lets hope that it is a Hemangioma and not a port wine stain. She told me if it was a H it would raise a little bit and that is all she told me. All of my friends are doctors. I have been talking a little to them about it and they all told me that there is nothing I could do until she was older than 2. My husband had been trying to reassure me that there was nothing that we could do and that "the standard of care was wait and see." I was very frustrated and started looking on the web and found this wonderful site. I started to tell him about this site and he started thinking that maybe there was something that could be done. He emailed pictures of our daughter to his friend that is and ENT/Plastic surgeon of cranial facial. His friend then emailed him right back and told him that she absolutely needed to be treated and as soon as possible. That was this weekend and she is seeing him on Thursday morning!

My point is that here I am surrounded by all of these doctors and not one of them knew of anything but wait and see. I would love to give them some information so that they could help others. My husband also works at a local teaching hospital and I would love for him to give the residents the information also especially the General Practice and Peds that rotate with him.

Does anyone know where I can find this information. I saw some threads on it back in 2003 and 2004 but nothing recent.

missy 01-23-2008 01:27 AM

Go look at

http://birthmark.org/research.php

You can give them what they love.... peer-reviewed published research!

Missy

emonaco 01-23-2008 05:18 AM

Yes - I think it is amazing how little doctors know about them. Most doctors have told us to wait and see and one pediatric opthamogosist even went so far as to tell me that I was "too worried" about my daugther and she would never have vision problems. A week later, I took Sophia to another doctor for a second opinion and sure enough, she has astigmatism which was pretty obvious since she could hardly open her eyelid!!!

I agree that so much more needs to be done to educate the doctors. If I would have taken our pedatrian's advice, we would be in big trouble now!!!

(just venting!!!)

Ellie

Ariella 02-17-2008 03:13 AM

Our pediatrician said the same thing regarding our daughters H on the lip.. he said hes never seen it in such a place. Last time we were there he told us that he was at a conference/lecture and the subject about H came up and apparently they are all taught to tell there patients to use the wait and see approach.. I told him that only if the pediatricians were trained better about Hemangiomas then we wouldnt have waited until the H started growing. Apparently if u catch it as soon as it comes out and u take ur child to have at least 2 lasers that the chances of it to grow are less.. He said from now on if he ever has a patient with a facial H he will reccomend them to a specialist right away.

It's really sad that hemangiomas are not taken serious by pediatricians only if they were............

lpm 02-17-2008 01:22 PM

I was pushing for steroids when my youngest was only a few weeks old, but the pediatrician would not do it. I lost confidence in pediatricians, family doctors, etc. a long time ago - well before my kiddo with the hemangiomas.

I agree that there needs to be education on vascular anomalies, but with our pediatricians, it seems to fall on deaf ears. My husband had a long talk with the one pediatrician, basically saying that he hoped our kid's case (and lack of action) was a wake-up call for them, and that this would not happen to another kid, but the talk really did not make much of an impression. That is not surprising, as they also think that you can let a sinus infection go for six weeks (until the kid gets kicked out of daycare), and it is fine if another kiddo vomits for 3.5 weeks straight, as long as they can keep down just enough fluids so as not to be dehydrated (but cannot keep down any solids).

I am sorry if I am venting, but in our experience, the "wait and see" seems to be the answer to every condition. We have changed doctors a few times, but with no difference in opinion. We just go straight to the specialist if we have a problem - the pediatrician is the one for well visits and filling out all of those school and sports forms.

manijo 02-17-2008 01:41 PM

In my case, when the doctor saw the H on my baby's lip said that propably it was a bruise. After a while, it kept growing and getting more reddish he said that it might be an H, but if it was he had never seen anoter H on a lip. H told us wai and see. When we canged doctorfor the third time, the H was swollen and it was ready to start bleeding. More specific we visited the doctor one day before the obvious wounds and she said that he just had chaped lips and we should use vaseline. I told her that he was crying all day and all night, that he was hungry but when I gave him the bottle he would drink some milk and then he started crying hysterically like he was in pain. She told me that it was me, that I was a first time mom and I didn't really know what his needs were and that was why I couldn't really understand what the reason of crying was. Even when the next day he lip started bleeding she said we should not take any action yet.
Thank God a friend of my family found a doctor that was a plastic surgeon and specialist to the H (something that is really rare in Greece. There are not many specialized doctors here) and ata last we treated him. But any scars my son's lip has, he owes them to the doctors who thought that it was to early to take action and to us, his parents, who believed them.

Sadie 02-03-2009 04:05 AM

Please know very often AVM's are very often diagnosed as a Hemangiomas by the most experienced of physicians. The correct diagnosis is paramount to finding the correct treatment options available.

jgoodman0814 02-03-2009 01:48 PM

I believe that the vbf put together a folder that had an abundance of information on all types of vascular birthmarks along with before and after photos. I know this because my daughter's story was one that was chosen to be put in it. Wonder if this information would be helful to a dr who has the "wait and see" approach.

khubbard 02-05-2009 04:38 PM

Pediatricians do need to be more educated about this! We were told that our daughter's would "grow" and then go away on it's own. It was approached like it was "no big deal." My husband and I became very alarmed and scared when at 5 weeks it just took off and grew so fast it was literally changing everyday and starting to affect her eye and nose. I did my own research and found information about treatments, called the peds office, made an appointment and insisted on a referral to Duke to see a specialist. We were not prepared at all for exactly what would/could happen and it was very scary. While hemangiomas are not extremely common, they are not very rare either. Pediatricians need to know more so they can help us parents make the best decisions for treatment. After all, they are the "front line" doctors we take our children to when concerns arise.
http://hubbardbabynews.blogspot.com


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