Vascular Birthmarks Foundation Forum - View Single Post - Can anyone share LM on neck??
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Old 09-03-2010, 03:15 AM
jmills jmills is offline
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Originally Posted by Aolmstead View Post
I'm back again, going on various on line search looking for success stories of anyone with infants with LM on left neck?? I am grateful with with this website with an abundance of support and information; i even read threads way back in 2005 posted by families. I'm curious to see how they are doing now? I know back then there was little resources and support on LM compared to what we have now. My daughter looks normal at age 1yrs old having done sclerotherapy at age 6months, however, she has come down with a bad cold and high fever for past two days. I am starting to see her left neck swell with each cough. I am so nervous everytime she gets sick. Anyone?? I'm hopeful she will do fine pending a procedure called percutaneous embolization by UCLA interventional radiogist. Doctors tell me I have to wait till she gets bigger so her body would respond better.

Can anyone shed some success stories? I'm curious how the 2005, 2006 families are doing now? Anyone with similar experiences, please let me know. I need your support.....Thank you and God Bless.
I have a 12 year old daughter with a LM on left side of neck. She was born with a mixed lesion. It contained micro and macro cysts when born. She had 2 OK432 injections at around 2 yrs old. The OK432 probably did kill the macro cysts.
It is normal for her neck to swell when ill. I thought it would stay swollen but it never did.
My daughters neck would allways return to normal size eventually after her illness. Usually would take a month. She would sometimes need a longer course of antibiotics and sometimes prednisone. Our daughters airway was never compromised enough to cause a breathing problem.
In the summer of last year, my daughters neck swelled, during a run of strep throat and it stayed swollen for a few months. It is a cosmetic issue when they are older. I found Dr. Shiels during this time.
This year , our daughter has had percutaneous sclerotherapy, twice with doxycycline.
She has had 2 illnesses and one being strep throat and no neck swelling. We use Dr. William Shiels with Nationwide Childrens Hospital for this.
I dont believe that she needs to get bigger to be treated and I dont think my dr. would agree, but your case may be different. If I could have treated my daughter using the doxycycline when she was 2, I would have, but no one was using it or I didnt know about it. This works a lot better than OK432 for microcysts, and with less side effects.
Our daughter will need to be checked to make sure new ones don't grow,
once a year. This will be a life long thing for my daughter to manage. If any do grow , we will go back and have those treated.
You can allways contact Dr. Shiels to get a second opinion. LM is one of his specialties and he is a Interventional Radiologist.
Email me at jhm884@yahoo.com if you have any other questions. I would be happy to discuss.
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