Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Wait and Observe-Is this the common solution? (http://birthmark.org/board/showthread.php?t=3801)

Aolmstead 04-19-2010 07:42 PM

Wait and Observe-Is this the common solution?
 
We went to see Dr. Venuela, who is the director of UCLA Ronald Reagan radiologist and came highly recommended by Dr. Levitin. Our first visit was basically discussing my baby's macrocystic LM (10month old) condition of the left neck and treatment options. He concluded that since she does not seem to have any physical signs of distress, he recommended us to wait and observe...however wanted to do a endoscopy to check and see if there were no obstruction in her wind pipe area.....

Anyhow, he didn't want to do any rash procedure due to her young age. He basically wants her body to heal naturally and encourages mother nature to take it's course without any unnecessary medical intervention...for now......

Is this common to wait and observe?? Anyone have similar experience? How long do I have to observe until another flare up?? I'm so worried and paranoid for every cough, fever, or sneeze she has....I know she's vulnerable with infection....

missy 04-19-2010 11:12 PM

I have no answers, except that I sometimes like a doctor who is conservative when it comes to rash procedures.

Do you have lianne chase's email address still? It might be better to email her directly and ask. It might be some time before another parent in your situation wanders in to the forum. If you don't have it, let me know and I'll find a way to get your question to her.

Also, if you haven't already, try the LM expert at
http://birthmark.org/experts.php

Missy

Aolmstead 04-20-2010 04:19 AM

Yes please. I would like to get her direct email address.

I posted another message board and she replied a while ago...sharing her experience with her son's LM on his hand....Isn't there her story on this site? I read it and was inspired.....

I have been very active on this message board and always look forward to hearing other parent's experience and stories......anything they can share would make me feel better....there's so much I want to learn about LM....my main concern is having my daughter being looked upon differently..... it's a cruel world out there where people and kids can discriminate others for looking different.....

missy 04-20-2010 12:00 PM

I'll send Lianne a message today... I hate to share someone's private email address without asking.

It's difficult for us, as an organization, to make the LM board a more active place... it's not as common as the other types of birthmarks and parents who have experience with it don't check in as often (as is right... they are busy raising their families), so I'm sorry you had to wait.

:)

Missy

shankearney 04-27-2010 08:54 PM

Our son has LM - Mostly Macro & Micro. At 2 weeks he had surgery to remove the macro but it didn't help. The micro was choking off his airway and the doctors at first thought that it was strider from being intibated. Thankfully, we called Kaiser and they said to come in immediately when we saw his chest caving in this last Christmas. After doing a MRI the micro LM had almost closed off his airway. He now has a trach and a g-tube. We had our second treatment of sclerotherapy last week (6 months) which looks likes its going to have success on the larger micro cysts. At the same time our ENT did two laser tests to see how our son will respond. If your child airway is not in danger its not bad to wait. It has been really stressful on our family with all the time spent at the hospital and trying to comfort a crying, hurting baby. Although, I'm not sure at what age it would be any easier. Our ENT and Radiologist at Kaiser Hollywood, Ca have been awesome. Hope that helps, we will be praying for you.

nickbar 04-28-2010 03:26 AM

Don't hesitate to talk with Dr. Levitin too about what Dr. V said (after all he recommended him).

Corinne


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