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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Expert's reply? (http://birthmark.org/board/showthread.php?t=3030)

bsmom 09-29-2008 04:26 PM

Expert's reply?
 
I have emailed two people in the "ask an expert" section and have not had success with a reply. Anyone else have this problem?

missy 09-30-2008 11:17 AM

Well, no, we don't usually have that problem. Who did you email and how long ago?

Normally, experts answer within a week. Every once in a while, one goes out of town and forgets to tell me.

Missy

bsmom 09-30-2008 09:26 PM

I sent information to both Dr. Waner and to Dr. Levitin. I just did it through the website section that said Ask the Expert. Should I just re-try?

missy 09-30-2008 11:05 PM

I see you tried again with a different email address... sometimes the aol, hotmail, yahoo - type addresses don't get through the filters on the physician's system. If you don't hear anything in a week or so, let me know!!

Missy

bsmom 10-01-2008 12:29 PM

Thank you! I guess my hotmail account wasn't working---

Pratts 10-01-2008 02:12 PM

I have not heard back either, so it is good to know that yahoo may not work.

nickbar 10-06-2008 12:24 AM

You can always email me directly. Happy to help

Corinne

jamieshortes 10-06-2008 05:06 AM

e-mailed Dr Waner over a month ago no reply..
 
Hi I have a Yahoo e-mail account. I don't have any other e-mail accounts created to use. I guess I could create another one if it will work better? Which one should I use? My daughter is scheduled for surgery on the 18th of October and I am VERY NERVOUS. I have a lot of questions that I would like to have answered by someone other than the Dr. doing the surgery so I can make sure my 7 month old will be okay and that this is the best thing for her. My baby's Pediatrician told me that the H can grow back after surgery and because her H is in her "midline" it could be deep and in her brain!?! She said Lilli needs an MRI before her surgery. The surgeon we have scheduled the surgery with didn't mention an MRI. He also told me that the H could not grow back. Also Lilli wakes in the night still to drink her bottle, I know she can't have any thing to eat for 8 hours before surgery, how do other mothers handle this??? I have never had to deny her food before and don't know how we will get through the night. ANY advice would be very helpful.
Thank you,
jamieshortes@yahoo.com

missy 10-06-2008 11:13 AM

I sent your question through to Linda, so she'll make sure to get back to you.

Missy

angelainastieg 10-10-2008 02:13 AM

Hi there. My daughter has PHACES syndrome (hemangiomas internally/externally). She has had several MRI and several surgeries. Let me guess, the steroids your daughter is on are making her eat like a horse ;) my daughter did when she was on them too. All I could do with the large time frame of "no eating" was to feed her bunches right before the cut off time. Really there is nothing more you can do except keep ur heart tough (its hard, very hard). I currently have my daughter Off all meds including chemo (vincristine) steroids, fluconazole, bactrim, and propranalol. I am self treating with "homeopathic" stuff and it is working marvelously!! She is 14 months, and I had just HAD ENUFF. Anyhow, I wish you the best of luck. And hang in there mamma, God wouldn't have given her to just anybody!! xoxoxoxo
angie


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