Has anyone had any experience with Dr. Francine Blei in NYC? - Page 2 - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

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

Reply
 
Thread Tools Display Modes
  #11  
Old 09-26-2005, 03:43 PM
AHHA09
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

http://public.fotki.com/AHHA09/as/

password: hemangioma

baby alex from birth to 8 weeks (now)
Reply With Quote
  #12  
Old 09-26-2005, 04:13 PM
KellyRR
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

Your daughter is absolutly beautiful!!!!!!! I dont have any experience with Dr. Blei but I do with Dr. Waner and where he is in NYC I would recommend you send him a email with pictures because he is the best of the best. He may say he would treat her just the same as Dr. Blei is treating her but it would be good to get that second opinion. He also is a wonderful man besides being a great doctor. He is very soothing. I hope all is getting better with the bleeding, it is a very scary and stressful thing.


Kelly
Reply With Quote
  #13  
Old 09-27-2005, 03:06 AM
Mr.B
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

Me and my wife just took our 7 week old daughter Jenna to see Dr. Blei today on the recommendation of Dr. Ceisler we were very pleased with her . She seemed to know what she was talking about and she put me and my wife somewhat at ease (theres only so much that can be said to a parent thats worried about the health of their child)we have another appointment next thursday to start oral steroids for Jenna's h.Its on her left lower eyelid and its starting to affect her vision so something has to be done quickly.I would really appreciate it if the poster who wrote in with his displeasure of Dr Blei would email me and let know his reason I really can use all the help I can get . Thanks in advance
Reply With Quote
  #14  
Old 09-30-2005, 12:00 AM
AHHA09
 
Posts: n/a
Default Re: Has anyone had any experience with Dr. Francine Blei in NYC?

Woo-hoo!!! I received some opinions about Dr. Blei from different people. Some were bad, some were good. I will give you mine now, after the 3 visits we've had with her.

First visit was initial consultation, and I opened this topic right after we had seen Dr. Blei. She told us we'd be starting oral steroids within a month. She also scheduled a visit with ped. ophtalmologist for us (she called their office herself, while we were in her office). She was able to put us in ASAP for the next morning. She also called our pediatrician to discuss Alex's conditon with him.

Second visit was next week, and we've had a slight problem the morning of the visit. Alex knocked off the scabs off the ulceration, and I covered the wound (which was not bleeding then) so it didn't get infected. When we got to Dr. Blei's office and they started removing the dressing the hemangioma started bleeding profusely, because the dressing I put on stuck to her skin . Dr. Blei was quick to use the surgical foam to stop the bleeding, she also put us in the hospital overnight for monitoring. At first I didn't understand why, now I just realised it - Dr. B mentioned that she only saw such bleeding with 2 other patients throughout her career. She came to visit us in the hospital the next morning. The day she put us in the hospital she also started Alex on Orapred (prednisolone), she started the steroid early because of the size of the ulcer and also because of the bleeding.

Our third visit was this week (that's the third week in a row we saw her). The night before the visit we had another incident - Alex knocked surgifoam off the H and gave me a scare. I called Dr. Blei's office at 10 PM, the Dr. on duty was paged, and I received a call back within 5 minutes. After I explained the situation she called Dr. Blei to consult and called me back. I was very comforted by the response time, and that Dr. Blei said she'd see us first thing in the AM if we wanted to, even though our appointment was not until 1:30 PM. When we came in she slightly increased the dose of steroids (from 3ml to 3.3), checked Alex out and answered all our questions. She said she spoke with our pharmacist, called ophtalmologist's office and put us in on the same day we have a next appointment with her.

Well, all in all - I feel that Alex is being treated great (not just medically), our insurance covers the treatment and the visits, and we never waited for more than 30 mins to see Dr. Blei. Contrary to many people's opinions (even those who highly recommended her) we found Dr. Blei to be friendly with us, but in a very professional way. She also gave us a phone # for another patient of hers who had a very similar H, and her parents were willing to talk to us.

Alex's H is improving, the puffiness is going down already, and she's been on orapred for a little over a week! We will eventually need surgery, but not until later. I took some fresh pics of little A and will post them on our fotki.com album shortly.

once again, thanks to everyone who replied to me!!!!
Anna (Alex's mom)
Reply With Quote
  #15  
Old 05-16-2008, 08:05 PM
nycdad nycdad is offline
Junior Member
 
Join Date: May 2008
Posts: 2
Default

could the person who has information about Dr. Blei, but does not want to post it, email me directly with the information?

thank you.
Reply With Quote
  #16  
Old 03-24-2009, 02:29 PM
mlescher mlescher is offline
Junior Member
 
Join Date: Feb 2009
Posts: 4
Smile Recent feedback about Dr. Blei?

Does anyone have more recent impressions/concerns? My daughter has had extensive treatment for her hemangioma, originally by Dr. Roy Geronomous and more recently by Drs. Waner and Levitin. all have been wonderful but I'm considering consulting Dr. Blei because I'm wondering whether my daughter is a candidate for any other type of treatment other than rapid pulse dye laser and repeated debulking of her lower lip. But I don't know if Dr. Blei could offer or suggest anything different. any thoughts. Thanks.
Reply With Quote
  #17  
Old 03-24-2009, 08:51 PM
khubbard khubbard is offline
Junior Member
 
Join Date: Jan 2009
Posts: 12
Default

Anna...My daughter is now 8 months old and has a hemangioma in the same place on her face as your daughter (as it sounds from your description). She also took oral steriods from the time she was 7 weeks old until 5 1/2 months old. She had a horrible time taking the steriod too (getting it down, that is). I've got some tricks I used that helped- email me at zhubbard@bellsouth.net and I'll share. I'd love to talk to you anyway as it seems we have similar situations.
http://hubbardbabynews.blogspot.com

Last edited by khubbard : 03-24-2009 at 08:59 PM.
Reply With Quote
  #18  
Old 03-25-2009, 08:51 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default

Dr. Waner/Levitin often consult with Dr. Blei on medical management of cases. I believe strongly that gathering many opinions is helpful in making informed choices that fit your instincts/wishes.

I have known of Dr. Blei for years and finally was able to meet her in person last fall at the VBF conference. She was extremely helpful in providing advice on a case I was helping with from overseas.

There are always expectations that aren't met and situations where things go wrong with any doctor. It is important to hear negative and positive results...but do keep an open mind on what your needs are and what you value from your specialist.

C
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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