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Search: Posts Made By: Aolmstead
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 11-09-2010, 05:38 AM
Replies: 5
Views: 6
Posted By Aolmstead
Thank you sweetpea for your many responses....i...

Thank you sweetpea for your many responses....i really appreciate for those who reply or share their feedback...it means alot to get the support and learn from others experiences....miley is doing...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 11-01-2010, 04:16 AM
Replies: 3
Views: 4
Posted By Aolmstead
Recommendation for check list-when finding THE right doctor for LM (macro)

Is there a checklist we can refer to when finding a specialist to treat lyphantic malformations? What are the 'must have' experiences when finding one?

Through research, it looks like Dr. Levitin...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 10-30-2010, 07:37 AM
Replies: 9
Views: 10
Posted By Aolmstead
Thank you-My reply to SF

Yes, I am on facebook but unsearchable. Are you?? maybe I can find you and see if I can invite you??
I have corresponded with Dr. Levitin (though not had the chance to meet him in person) over the...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 10-17-2010, 08:12 PM
Replies: 4
Views: 5
Posted By Aolmstead
hi Sharon, i was compelled to write because i...

hi Sharon,

i was compelled to write because i too have a daughter (16mths old) who was dignosed with LM macro initially on her Left neck. Now through MRI's, the cyst remains large deep down her...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 10-17-2010, 08:08 PM
Replies: 5
Views: 6
Posted By Aolmstead
may i ask how old are you? i have a 16month old...

may i ask how old are you? i have a 16month old baby girl with LM (macro) on left neck. however there seems to be a flair up and now it's swollen all around her neck. poor thing. bless your heart and...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 10-17-2010, 08:05 PM
Replies: 5
Views: 6
Posted By Aolmstead
Flair up on the neck-so worried-LM macro

My daughter has a flair up and I'm seeking medical help in Japan. I have family in Japan and did some research on lymphangioma. After all OK-432 originated in Japan so perhaps I can get some...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 09-27-2010, 10:29 PM
Replies: 2
Views: 3
Posted By Aolmstead
Any special diet for Lymphangioma??

Does anyone know or recommend any good nutrition/diet for a child with lymphangioma? Not sure if there is such?? For example, any vitamins? special herb? vegetables? Anything advice on how to...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 09-23-2010, 09:19 PM
Replies: 9
Views: 10
Posted By Aolmstead
seeking SF Lymphatic Malformation specialist

Thanks Corrine for your recommendation for a physician in SF. I heard UCSF was very good. I looked her up and I'm not sure if she can do LM...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 09-11-2010, 12:16 AM
Replies: 9
Views: 10
Posted By Aolmstead
Anyone??? Does anyone know a good doctor in the...

Anyone??? Does anyone know a good doctor in the Bay Area.
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 09-05-2010, 06:16 AM
Replies: 11
Views: 12
Posted By Aolmstead
Thank you for your reply. I am so glad to read...

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...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 09-05-2010, 06:09 AM
Replies: 9
Views: 10
Posted By Aolmstead
Smile San Francisco specialist-Any recommendation?

We might relocate to the Bay Area. My daughter (15 months) has macro LM on the left neck. Can anyone recommend a trustworthy and experienced specialist in San Francisco?? I did general research...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 07-14-2010, 04:28 AM
Replies: 3
Views: 4
Posted By Aolmstead
hello-wanted to give you my prayers

Hello,

I'm a mother of a 13month baby girl with LM on her left neck. (you can read about our situation on various postings under Aolmstead). I totally understand your concerns for your little girl....
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 06-06-2010, 04:46 PM
Replies: 11
Views: 12
Posted By Aolmstead
Thank you sweetpea...You are right. I did get on...

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...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 06-04-2010, 11:24 PM
Replies: 11
Views: 12
Posted By Aolmstead
Thanks Missy for your response. I wish I could...

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...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 06-04-2010, 05:43 AM
Replies: 11
Views: 12
Posted By Aolmstead
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...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 05-14-2010, 07:40 PM
Replies: 2
Views: 3
Posted By Aolmstead
Smile Status-1yr old little girl with Macro-LM on left neck

I'm back on the message board in hopes to get some support and advice re: my 1yr old daughter with macro LM on neck.

Quick recap-
Nov. 2009-at 6months she was diagnosed Macro Lm of neck-rushed to...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 04-27-2010, 10:03 PM
Replies: 16
Views: 17
Posted By Aolmstead
OMG I am so glad to finally get in touch with...

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...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 04-20-2010, 05:19 AM
Replies: 5
Views: 6
Posted By Aolmstead
Yes please. I would like to get her direct email...

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...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 04-19-2010, 08:44 PM
Replies: 1
Views: 2
Posted By Aolmstead
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...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 04-19-2010, 08:42 PM
Replies: 5
Views: 6
Posted By Aolmstead
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...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 04-19-2010, 08:30 PM
Replies: 16
Views: 17
Posted By Aolmstead
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)...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 04-05-2010, 05:24 AM
Replies: 16
Views: 17
Posted By Aolmstead
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...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 03-25-2010, 10:45 PM
Replies: 3
Views: 4
Posted By Aolmstead
UCLA recommendation pleeeeeeese

Hi Corrine,

We live in Las Vegas and plan to seek California for medical treatment for my 9month old baby girl who has lymphagioma. We finally got word that our HMO/HPN insurance approved for UCLA...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 03-18-2010, 09:56 PM
Replies: 16
Views: 17
Posted By Aolmstead
Thank you Lianne

Yes, I am working with Miley's local pediatricians, ENT doctor and other professionals I could think of to advocate & support my daughter that her condition is medically necessary to go to CA for...
Forum: Lymphatic Malformations (also known as cystic hygroma and lymphangioma) 03-18-2010, 06:36 PM
Replies: 3
Views: 4
Posted By Aolmstead
Can anyone recommend a specialist in UCLA?

I heard that UCLA has a great childrens facility, but not sure if they have any one who is familiar with Lymphagioma?

We live in Las Vegas and willing to drive to Los Angeles. I understand Dr....
Showing results 1 to 25 of 31

 
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