Has anyone had any experience with Dr. Francine Blei in NYC? - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  

1994 - 2014 Celebrating 20 years with 75,000 networked into treatment, over 3,000,000 views monthly on our world wide websites, virtual chapters on 6 of the 7 continents in the world, 500 families provided free lodging while seeking a medical opinion or treatment,over 400 conference scholarships awarded, 200 Day of Awareness events, 15 conferences, 12 programs (including our Ask/Accept Anti Bullying Program),10 walk/runs, 6 research projects funded, 4 physician education grants awarded, 4 college scholarships awarded, 3 Galas, and 2 International Missions Trips with over 300 treated by our international team.
Donate to VBF

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #1  
Old 09-19-2005, 07:35 PM
AHHA09
 
Posts: n/a
Default Has anyone had any experience with Dr. Francine Blei in NYC?

Our baby girl was referred to Dr. Blei by her pediatrician. We only ad one visit, the doctor seems very nice and knowledgeable. I wanted to know if anyone had their babies treated by Dr. Blei. Her medical center accepts our insurance, money is kind of an object for us. :-\
I was wondering if anyone can give me their opinion on Dr. Blei - good or bad.
We are going to see Dr. Blei again, to discuss oral steroid treatment option which she wants to pursue. Any advice from parents who've been through this? Our baby is 7 weeks old now.

thank you in advance,
Alex's mom
Reply With Quote
  #2  
Old 09-19-2005, 08:34 PM
DevansMommy
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

Many times you have to go with your gut. I can't tell you how many times we've gone to see a "knowledgable" doctor who turned out to be very rude and didn't want to treat my son. If you like the doctor then I think it's worth another visit,,,atleast to gather information and make an informed decision. I looked her up and it looks like she is part of a VA team and they meet to discuss the patience which is very good. They also have a support group that meets, so it seems as if they understand that times like these can be emotionally draining. Good luck with things, let us know how it goes. Can you tell us more about your daughter? My son was on oral steroids for about 7 months so I would be glad to help in any way I can..


Sarah
Reply With Quote
  #3  
Old 09-19-2005, 10:59 PM
AHHA09
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

Alexandra was born on July 31st of this year. She had a flat pink spot on her cheek between her nose and her eye that looked like a big "angel kiss" to me. The ped in the hospital didn't specifically say it was a hemangioma, but said it looked like it wasn't going to go away. That was fine with me, because it wasn't very red, and it was level with the skin. When I went to the pediatrician after we got home from the hospital she said she thought it was a hemangioma and referred us to a regular dermatologist. We didn't have time to go right away, and it worked out in a way that I saw another doctor in my ped's office - Alex's hemangioma turned purple and grew above her skin level by then. I did have generic resources about hemangiomas and read that it was a normal process, so we weren't very worried. When the other doctor saw us he recommended that we see Dr. Blei and an ophtalmologist (Dr. Steele in NYC) ASAP. We met with Dr. Blei last week, and she seemed very nice. I liked the fact that she called our pediatrician while we were at the office to discuss the treatment plan for Alex, she also referred us to the same ophtalmologic group as our pediatrician without even speaking with him. She also called us later that week to follow up, to check how our visit to the ped went, and if the reaction to immunization shots was OK (big plus for me - it shows me that she cares...). We are just getting into this, but both Dr. Blei and Dr. Steele recommended that she start oral steroids. Ophtalmologist wants it done "yesterday", which is a bit of a worry factor to me, I really don't want her eye sight to get affected by the growing hemangioma. My husband also mrntioned to me the other night that he thinks the H is putting too much pressure on our baby's nose, so we'll ask the doctor about that as well. I don't even know what type of hemangioma she has, I never asked the doctor during our first visit. My husband found this site, and I am so grateful he did - this is a great resource and support tool.

Alex is beautiful to us no matter what, but I want other people to see her beauty as well, without staring at her with disguist. She's a wonderful baby and we are exploring all possible options to have her looking the way she did when she was born - a gourgeous little girl
Reply With Quote
  #4  
Old 09-19-2005, 11:21 PM
AHHA09
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

...and Sarah, thanks so much for your support We might post pics of Alex later

Anna
Reply With Quote
  #5  
Old 09-20-2005, 12:30 AM
eprmo eprmo is offline
Senior Member
 
Join Date: Dec 2003
Posts: 149
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

It sounds to me that Dr. Blei is being aggressive and thorough. I met her at a conference and she seeems very didicated to the study and treatments of VB's.

Go with your gut, ...

Elissa
__________________
Elissa Rifkin
VBF Developmental Specialist
psyelectro@aol.com
Reply With Quote
  #6  
Old 09-20-2005, 02:20 PM
DevansMommy
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

Anna - Let me know if there is anything I can do. It really does sound like you've found a good doctor. H's that can effect the nose or eye area do need to be treated more agressively than some others. Email me if you'd like to chat sometime.

Sarah
Reply With Quote
  #7  
Old 09-22-2005, 02:30 PM
AHHA09
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

Alex had to start her steroud treatment on tuesday, due to her hemangioma bleeding... she is getting 3 mg of prednisolone daily. we hope to see progress within a week :-\
Reply With Quote
  #8  
Old 09-22-2005, 08:31 PM
DevansMommy
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

Anna - good luck & I hope that you see improvement real soon. I've heard stories of some babies who had a hard time of steroids,,,crabiness etc but for us it was totally worth it. If you run in to any questions about this please post here. There are a lot of experienced people here. One thing that I wish our derm had told us, and hopefully yours already has is that if your daughter is crabby or spitting up a lot they may want her to take Zantac or something similar. Many docs prescribe it right along with the oral steroids just in case. It protects their little bellies. Let us know how things progess & be sure to take LOTS of pictures. Sometimes this was the only way I could notice changes in the h.

Sarah
Reply With Quote
  #9  
Old 09-23-2005, 03:29 AM
AHHA09
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

well, as far as pictures go... tuesday morning Alex hit herself on the H and got all the dried up blood off - the whole blotch. The H didn't start bleeding then, I panicked, but put some dressing on and we brought her to Dr. Blei. That's when it all started - when Dr. tried to remove the dressing from the wound the skin broke and it started bleeding profusely, so she had to use Surgifoam to stop the bleeding. Now instead od H I see a piece of plastic foam on her face. It's supposed to dry off on it's own, so as soon as it does there will be pictures taken. We don't go to the dermatologist at all, just our ped, hematologist and ophtalmologist. Dr. Blei prescribed Zantac along with prednisolone, so we give little Alex both drugs.

??? Now, my question is: how did your son take the steroids? Alex hates them, she closes er eyes so tight and twitches every time she gets some prednisolone in her mouth. :-\ I t makes me feel horrible :'( Anyone knows any tricks to make the process of taking this liquid easier?

Sarah thank you so much for your continued support!
Reply With Quote
  #10  
Old 09-23-2005, 06:11 PM
Felissa
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

I'm going to give a different opinion on her. I couldn't stand the lady. I thought she was a horrible doctor. I don't have anything good to say about her at all. I'm not going to go into detail on here and I don't want to discourage you to not go see her again. You have to do what you feel is right. However if you want any more info. just let me know and I'll give it to you. Like I said, I don't want to post anything you don't want to hear because I don't want to discourage you from doing what you feel is right but I just thought I'd give you a heads up of a different opinion.
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Anyone have experience with perfecta laser? jettmom Port Wine Stain Help and Resources 5 04-24-2009 12:44 PM
Does anyone have experience with Dr. Lowe? KrysH Help and Resources for Hemangiomas 4 09-27-2008 10:38 AM
Port Wine stain experience. Davon Port Wine Stain Help and Resources 13 06-05-2006 11:11 PM
S Florida: Any experience with MCH, Dr Duarte or others? kris_s Port Wine Stain Help and Resources 0 12-30-2004 05:11 AM
My experience with PWS Figliulo Port Wine Stain Help and Resources 3 10-04-2004 08:06 PM