Vascular Birthmarks Foundation Forum

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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Can anyone share LM on neck?? (http://birthmark.org/board/showthread.php?t=3873)

Aolmstead 06-04-2010 04:43 AM

Can anyone share LM on neck??
 
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.

missy 06-04-2010 01:37 PM

I have nothing good to add... just wanted to say HI! If nothing, I appreciate the update on your daughter.

I can understand how frustrated you must feel. The families from four and five years ago rarely post anymore. It's a good thing / bad thing. Good in that they no longer need us. Bad in that we don't get to benefit from their support.

Missy

Aolmstead 06-04-2010 10:24 PM

Thanks Missy for your response. I wish I could help other parents sharing my experiences. I sometimes feel alone but try to be positive since I can reach out to professionals and doctors on this site for support. I guess I wanted to hear more from families who can tell me how their lifestyle is? history of their kids condition? how they coped? ect.. I'm almost tempted to create a blog for my kids...that way I can periodically attach the link to this website??? I know If I were a parent seeking support, I would gladly read on others life experience with LM.

Please feel free to pass on my email contact to those you feel can help.
thanks Missy...

missy 06-05-2010 12:31 AM

Since it is a little more rare than other types of vascular birthmarks, it is harder to find support. The good thing is that most of those families are just living a normal life... like they're supposed to!

Let me know if you need blog space. Also, if you'd write up your experiences so far and send a picture, we'd love to post it on our awareness site! That way, other parents who come here can read your story all in one place.

Hugs,

Missy

sweet pea 06-05-2010 05:13 PM

If you have a facebook, there is a whole group of mothers/parents who have children with LM on the neck... You can search the LM group on there and we have a number of people on there, including some teens/young adults with the condition. It's a great support network.

Aolmstead 06-06-2010 03:46 PM

Thank you sweetpea...You are right. I did get on facebook and found some families. I already got a reply within 5 min last night and we plan to talk on Sun about our daughters and overall experiences....

sweet pea 06-07-2010 05:36 AM

No problem. :) There was a large group on myspace, but we pretty much all switched over to facebook. There are MANY moms on there with children who have LM on the neck. I'm still looking for other 'odd' ones like myself, who have LM somewhere other than the head/neck region. haha. Glad you found some people to talk with.

JMR00 08-19-2010 01:24 PM

Facebook
 
Hia, I would also like to join the group on facebook, but I can't find it. Could someone give me a link or something?
Thanks

Quote:

Originally Posted by sweet pea (Post 19594)
No problem. :) There was a large group on myspace, but we pretty much all switched over to facebook. There are MANY moms on there with children who have LM on the neck. I'm still looking for other 'odd' ones like myself, who have LM somewhere other than the head/neck region. haha. Glad you found some people to talk with.


jmills 09-03-2010 03:15 AM

Quote:

Originally Posted by Aolmstead (Post 19562)
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.

Aolmstead 09-05-2010 05:16 AM

Thank you for your reply. I am so glad to read your posting. I will email you. Again thank you. It's nice to have a fellow parent speak and share their experiences. It means alot and that I am not alone....


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