Flair up on the neck-so worried-LM macro - 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.
Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Lymphatic Malformations (also known as cystic hygroma and lymphangioma)

Reply
 
Thread Tools Display Modes
  #1  
Old 10-17-2010, 07:05 PM
Aolmstead Aolmstead is offline
Member
 
Join Date: Mar 2010
Posts: 31
Default Flair up on the neck-so worried-LM macro

My daughter has a flair up and I'm seeking medical help in Japan. I have family in Japan and did some research on lymphangioma. After all OK-432 originated in Japan so perhaps I can get some answers....I am so worried about my little girl who is 16 months; any advice?

any success with Ok-432..anyone?
Reply With Quote
  #2  
Old 10-17-2010, 10:48 PM
missy missy is online now
Administrator
 
Join Date: Apr 2006
Posts: 1,724
Default

I have no advice at all... just wanted to say and give you a hug!!

Let us know what you find out!

Missy
Reply With Quote
  #3  
Old 11-05-2010, 10:04 PM
sweet pea sweet pea is offline
Senior Member
 
Join Date: Jul 2006
Location: Southern California
Posts: 111
Default

Quote:
Originally Posted by Aolmstead View Post
My daughter has a flair up and I'm seeking medical help in Japan. I have family in Japan and did some research on lymphangioma. After all OK-432 originated in Japan so perhaps I can get some answers....I am so worried about my little girl who is 16 months; any advice?

any success with Ok-432..anyone?
OK 432 has been known to be very successful with macro LMs. Good luck with it.
__________________
what makes you different, makes you beautiful
Reply With Quote
  #4  
Old 11-09-2010, 04:38 AM
Aolmstead Aolmstead is offline
Member
 
Join Date: Mar 2010
Posts: 31
Default

Thank you sweetpea for your many responses....i really appreciate for those who reply or share their feedback...it means alot to get the support and learn from others experiences....miley is doing well but ultimately needs to get a procedure done to 'kill' the macro deep down her chest bone area....our recent MRI shows that it's massive (macro) and now there are multiple locations....I'm so upset that when they first identitfied it at 6months and had MRI at 13months old, doctors did not intervene. ....they said 'wait and observe'....till she got bigger....now miley is at 17months and her swelling around her neck was the biggest I've ever seen.....we did 2nd sclerotherapy w/doxycycline immediately..(thought wanted to take her to the Dr. shiels and Dr. Levintin but time was the essence and couldn't travel that far...besides our HMO would take forever to approve)....we used our local resources to treat her swelling ASAP....three weeks later she is recovering but waiting to consult with interventional radiologist....I'm soooooo looking forward to seeing what he has to say......I have all my notes and 'thanks' to your advice....I will ask him those questions.....
wish us luck......hope she will be in the right hands of an experienced physician...xoxo
Reply With Quote
  #5  
Old 11-09-2010, 10:41 AM
missy missy is online now
Administrator
 
Join Date: Apr 2006
Posts: 1,724
Default

When is your consultation with the interventional radiologist? Do you know yet?

Missy
Reply With Quote
  #6  
Old 11-11-2010, 03:18 AM
sweet pea sweet pea is offline
Senior Member
 
Join Date: Jul 2006
Location: Southern California
Posts: 111
Default

Well the "wait and see" approach is still the typical one used by many doctors. Usually, it can be ok to do so that the child is older and can handle treatment better. But it's really on a case by case basis. With the location of hers, I don't think wait and see is the best approach. I know HMOs can be a pain. Is there any way to switch to a PPO? Even just for a year or two and then you can switch back. It can make seeing specialists a lot easier while looking for treatment. Hope the consult goes well! hugs.
__________________
what makes you different, makes you beautiful
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