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tlampley3 · #1 05-10-2010, 03:51 PM

hello! my dd was born on 4-13-10. she had some redness under her chin and what appeared to be a bruise on the left side of her head at birth. both have gotten worse, so i took her back to the dr. on friday and he said it was a hemangioma. he also called it a port wine stain, and my understanding is they are two different things. i am now looking for a second opinion from a pediatric dermatologist. i'm having a little trouble getting into some places, but so far she has an appt. with dr.albert woo this weds. at children's in stl and another on june 4th with dr joseph conlon of springfield, il. does anyone have any experience with either of these doctors?

nickbar · #2 05-10-2010, 08:23 PM

I do not have experience with these doctors, but it is important to have the proper diagnosis so you know what your options are and why might to expect. I would encourage you to have a list of questions with you during your appointments. Remember you are the "customer" and demand proper service. There are a lot of conflicting and outdated information even among "specialists". If you have any questions about what you are told, do not hesitate to contact one of our experts on the front page for another opinion/to ask questions. I would be happy to help you should you need anything as well. VBF has posted a list of questions you may consider asking on our resource list.

tlampley3 · #3 05-10-2010, 09:49 PM

thanks for the reply. where on the website is this list of questions located? that sounds really helpful! my mom emailed photos to a pediatrician and she also believes they are multiple hemangiomas. i will know more after wednesday. i will try to post pictures when i can. if you wouldn't mind taking a look, i would appreciate it. thanks again.

nickbar · #4 05-12-2010, 09:10 PM

sorry, I did not see your post until now. I could not find the questions here, but do have them saved if you need them in the future. Hope your appt. went well.

tlampley3 · #5 05-15-2010, 01:37 AM

we saw dr. berk today at st. louis children's hospital. he diagnosed livy as having segmental hemangiomas on the left side of her head and under her chin. she also has them forming on her bottom lip. he mentioned the possibility of airway involvement, as well as restricted blood vessels to the brain. we did an ekg today and if it reads ok, she will start propranolol on monday. he gave us topical propranolol to use over the weekend. we are holding off on the MRI until 6 months, as she is only 4 weeks old. i have read a little about possible airway involvement, but i am concerned about the restricted blood vessels and haven't found much information on them. does anyone know anything about this? also, how many of you started the propranolol at home rather than the hospital? he said it is not their practice to admit them to the hospital to start treatment. just curious if others have done it this way?

tlampley3 · #6 05-15-2010, 01:38 AM

corinne, i found the list of questions in another post. thank you!