New to Lymphagioma-9month old baby girl-advice please? - Page 2 - Vascular Birthmarks Foundation Forum
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Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Lymphatic Malformations (also known as cystic hygroma and lymphangioma)

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  #11  
Old 04-05-2010, 04:24 AM
Aolmstead Aolmstead is offline
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Default Follow up on Miley

Good news with Dr. Levitin's support and evaluation on Miley's LM condition, he was able to convince our HMO plan that her condition was serious and that it needed urgent medical attention. It has been approved and we finally got authorization to go to UCLA Ronald Reagan medical hospital. Dr. Levitin recommended an interventional radiologist at UCLA and we will proceed with that....We are just waiting to get a consultation date...I am anxious to get Miley (10months old baby girl) in ASAP...she is coughing alot and is uncomfortable....her mass (according to Dr. Levitin's assessment on her MRI) is internal and covers within her chest, left lung and it's extensive ....possibly spreading agressively...Her throat/neck area inflates each time she cries or coughs alot....(looks like a bullfrog)...I noticed the back of her head/underneath her hair line a little pellet like growth is emerging...not sure if it's related to her current LM of her left neck...Please pray...I am soo scared and do not know the outcome but hopeful she will be in good hands with the right specialist.......
California here we come!!!
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  #12  
Old 04-05-2010, 01:43 PM
missy missy is offline
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I am sooo glad you were able to consult with dr. levitin. He is really very good. PLUS his attention to the financial side of treatment helps a great deal.

Please keep us updated on Miley. Let us know when the consultation is going to be.

Missy
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  #13  
Old 04-09-2010, 11:58 PM
nickbar nickbar is offline
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Anxious to hear how your appt. went yesterday. I emailed you (but I think that was work address and you are on the road). You've been in my thoughts and prayers!

Corinne
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  #14  
Old 04-19-2010, 12:17 AM
sweet pea sweet pea is offline
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1) it's very hard to completely remove a LM. Many times it will always be there, though it's not that bad to live with.
2) sclerotherapy only works with larger, macrocystic masses. A few with micro LM may be lucky and have it work, but it's not as likely.
3) Your child can grow up normal. Just have to deal with a little bit of extra care.
4) There isn't really a "cure", just treatment for it.
5) The number of treatments depends on the childs specific case. Some require more than others.
6) A child with LM can do everything any other child can do. Though with it near the neck, you must be watchful of it getting near the trachea.
7) sickness can cause a flair up. but it's nothing to be overly worried about.

I have a LM myself, and am 20 years old. I'm a full time college student and do everything any other person my age does. I just look a little bit different.
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  #15  
Old 04-19-2010, 07:30 PM
Aolmstead Aolmstead is offline
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Default Is it common to just wait and observe for LM

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 (10month old) condition and treatment options. He concluded that since she does not have any physical signs of distress or obnormal swelling, he recommended us to wait and observe. He wants her body to heal naturally and basiclaly wants mother nature to take it's course without any unnecessary medical intervention...for now......

Is this common to wait and observe?? I'm so nervous for another flare up...She has macrocystic lymphangiomo on left side of neck which was treated with doxycoline/slerotherapy 12/31/2009. The big gold size swelling went down and it looks normal. But follow up MRI 3/2010 reveals that there is still some residual lymphatic fluids trapped in her chest cavity/left lung surroundings......Again, she looks like a normal healthy baby and you could never tell....she is coughing alot and makes me worry so much knowing there is a huge mass/cyst fluid inside her....

Has anyone had the same experience?

By the way, can a child out grow lymphangioma?

To Sweet pea-Thank you for sharing your thoughts. I truely appreciate it. You mentioned at the end you can do everything the same like a normal person but appears different. What area do you have the lymphangioma? Is it physically noticible? Does the size get any bigger as a person grows? If you don't mind please email at arisa_hayama@yahoo.com so I can share my cell # to you; I would love to talk to you about my baby daughter...As a mother I want to learn as much about this condition.....thank you....
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  #16  
Old 04-26-2010, 06:31 AM
nadinelk nadinelk is offline
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Hi there- I'm also in Las Vegas. While my son doesn't have an LM (he has a hemangioma), we are in almost the same boat. After 20 months of treatments that didn't work, we are also going to Dr. Levitin for removal. I also have HPN, but the POS and Dr. Levitin also assured me that he is capable of getting exceptions for the surgery.
Please let me know if you need anything, locally. We travelled back and forth to a ped. derm. in san diego for a year, so I know what you are going through. You can always contact me directly- nadinelk@me.com
I'm in the Mountains Edge area and am thinking about putting together a local awareness group and raising money for the VBF.
I hope Miley is doing well!
Nadine
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  #17  
Old 04-27-2010, 09:03 PM
Aolmstead Aolmstead is offline
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OMG I am so glad to finally get in touch with someone locally. Hi Nadine and thank you for reading the message boards. I am learning as much as I can about LM and the more I know the better prepared I am for this defect. Yes, Dr. Levitin is a wonderful person and I am forever grateful to him. I never met him in person but he was so instrumental in evaluating my daughters MRI (via FedEx to New York) he was patient to go through his assessment over the phone, AND totally helped us convince our HMP/HPN to get UCLA Ronald Reagan to approve further diagnosis and treatment for my daughter. I am forever grateful to him. This foundation website is a blessing as well. It's comforting to know all the support out there. God Bless.
I live in Summerlin. I will definitely email you directly so perhaps we can chat.

Here's an update for those who are reading/following this message board...
Miley is eleven months and thriving well. Yesterday, we saw her ENT doctor who will be scheduling her largyscopic test for Thursday 6am. Based on the UCLA and Dr. Levitin's recommendation, we want to make sure there is no compression/obstruction in Miley's windpipe area. The results will dictate whether or not we need to proceed with a procedure or not.
Will update soon....hope all goes well...The waiting period is frustrating but we have no choice due to her young age.....nothing can be done at this point but to wait and see for the test results.....
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