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  #1  
Old 10-14-2003, 10:09 PM
c68pet
 
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Default looking for H. support group in Seattle area.

:D Hi evryone,

We are new to this hemangioma support group!
We 've a daughter born with a cavernous H. on the right cheek, and we are looking for a H. support group in the Washington, Seattle area. Is there one in this state ?
E-mail back, and thanks in advance to everyone who can help...

J's mom
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  #2  
Old 10-14-2003, 10:20 PM
nickbar nickbar is offline
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Default Re:looking for H. support group in Seattle area.

I do not know of a local support group, but you are welcome to contact me at rinner@comcast.net. We live in Vancouver Wa.

Our son has h. on his face and neck.

Corinne
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  #3  
Old 10-15-2003, 02:53 PM
Jack
 
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Default Re:looking for H. support group in Seattle area.

Hi J's mom,

Just wanted to drop you a line and say that our daughter also has a cavernous hemangioma on her cheek. If you would like to e-mail me, it is

stu@potman.freeserve.co.uk

Our daughter is now 10 months old.

Alison

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  #4  
Old 11-02-2003, 05:41 AM
CA
 
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Default Re:looking for H. support group in Seattle area.

We live in Oregon (West Linn - just outside of Portland). Our daughter has a nose tip hemangioma and another one on her neck. We just found this information out last week. We are looking for a support group. We are also wondering if there are any specialists in Oregon or Washington. If not, we are willing to travel anywhere needed to get our baby properly treated.
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  #5  
Old 11-03-2003, 09:08 PM
nickbar nickbar is offline
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Default Re:looking for H. support group in Seattle area.

CA

Hello!!! We live in Vancouver. We go to OHSU/Doernbecher in Portland. We see Dr. Krol...he has a special interest in Hemangiomas and has been very wonderful! He spends a lot of time with each child and listens to the parents. Also, Dr. Lee has done two laser treatments on our son. He is also a wonderful dr. (he was recently interviewed by KGW NEWS).

Dr. Krol's clinic # is 503-418-5238

Our son is 6 months old now and we have been in treatment for 5 months. If you have any q's or want to "talk" go ahead and contact me.

Corinne and Nicholas
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  #6  
Old 11-04-2003, 06:31 AM
CA
 
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Default Re:looking for H. support group in Seattle area.

Hi Corinne,
Thanks for the contact info. for OHSU. We took Kelly to Dr. Macarther at Doernbechers. There was another doctor seeing her at the same appointment, but I don't know what his name was. I wasn't sure what kind of experience OHSU had with hemangiomas so I was a little nervous about having her seen there. Now that I know that they deal with this condition, I feel a lot more comfortable. We go back to OHSU/Doernbechers on the 11th of November. We will take those names with me and ask if they agree with Kelly's treatment plan.

Have any of you ever seen the specialist that this site lists for the Seattle area - Dr. Jonathon Perkins? I am going to be in Seattle next week showing Kelly off to my relatives (she is only nine weeks old) and I was thinking of contacting him for a possible second opinion.

Carolann (Kelly's Mom)
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  #7  
Old 11-04-2003, 09:51 PM
nickbar nickbar is offline
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Default Re:looking for H. support group in Seattle area.

Dr. Macarther saw my son too. She is an ENT specialist correct?

She just took a quick look at my son during an anomilies clinic. Have you asked to be scheduled for one of those...it like the first tuesday of each month. All the derm. specialists are there at the same time.

Dr. Waner is going to be in Portland this weekend. I've been trying to find out if he is seeing any kids.

Corinne
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  #8  
Old 11-05-2003, 09:18 PM
CA
 
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Default Re:looking for H. support group in Seattle area.

Hi Corinne,

Dr. MacArther is an MD: Assistant Professor, Pediatric Otolaryngology, Head and Neck Surgery. We are suppossed to see her again on Tuesday.

Kelly is scheduled to see Dr. Knol on Monday. They want us to go to both appointments. I'll ask about the anomilities clinic.

Let me know if you find anything about Dr. Waners visit. I'll search around for info. of his visit too. I'll let you know if I get anywhere with that search.

Carolann
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  #9  
Old 11-06-2003, 06:22 PM
nickbar nickbar is offline
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Default Re:looking for H. support group in Seattle area.

CA

I just called Dr. Waner office, then the lady in Porltand corrd. his trip and she said call the hotel....So I called the Governors Hotel and left him a message....to call me if he has time to see our son.

Long shot...but anything for my babe.

Corinne
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  #10  
Old 11-06-2003, 06:27 PM
nickbar nickbar is offline
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Default Re:looking for H. support group in Seattle area.

CA,

DR. Macarthur seems great too. I wish I would have spent more time with her...but at the time it did not seem necessary. My insurance co. classified her as ENT Doctor... I wasn't sure her official title and department.

Thank you. I will keep that info handy if we need to see her in the future.

Corinne
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