Vascular Birthmarks Foundation Forum - View Single Post - New to Lymphagioma-9month old baby girl-advice please?
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Old 03-15-2010, 11:07 PM
Aolmstead Aolmstead is offline
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Join Date: Mar 2010
Posts: 31
Default New to Lymphagioma-9month old baby girl-advice please?

I live in Vegas and gave birth to a normal healthy baby girl. When she was 5months old, she started day care; A week into day care she contracted RSV during the peak flu season. She battled this for a month, then one day when I picked her up at day care I was shocked to see a HUGE growth (apple size) on her left neck?? I took her to the ER and CT scan revealed she was diagnosed with LM. As parents this was foreign to us; we were devasted; little was known about this conditon; researched online and became even more sadden with negative literature on this defect. Anyhow, we were referred to an ENT doctor who then performed sclerotherapy. After two months, the neck mass subsided significantely, however MRI follow up visit revealed her mass and residiual fluids were still trapped in her chest. We are now faced to get another referral, this time a 'radiologist'. I am relying on the ENT doctors expertise for an experienced radiologist who is familiary with LM patients. The date is pending and hopefully the radiiologist will treat it once and for all!

Questions:
1) Will the LM go away for good?
2) Has anyone else had experienced with sclerotherapy?
3) Can my child grow up normally w/no obvious physical deformity?
4) Is there a cure?
5) How many treatments are necessary to get the LM mass down?
6) Can my child do normal activities?
7) I'm so protective and terrified IF she ever gets a cold or sick that the mass will flair up?
8) Any advice?

Thank you to everyone. This website is a true life saver and gives me peace of mind to know there is an organization/community who I can relate too....

Oh I am also wanting to travel to California for a LM specialist. I spoke to Dr. Levintin and Dr. Linda. They were very helpful. Does anyone have any recommendation? I don't think there are qualified experienced LM doctors in Vegas. I am willing to travel WHEREVER necessary...I truely want the best treatment for my baby girl.

Last edited by Aolmstead : 03-15-2010 at 11:11 PM.
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