Vascular Birthmarks Foundation Forum - View Single Post - Lymphatic Malformation of Tongue
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Old 11-05-2006, 09:23 PM
jacquismom jacquismom is offline
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Join Date: Jul 2005
Location: Oregon
Posts: 16
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Hi Bobby -

One of the great things about Dr. Waner is he believes that as much as is possible, every child should have a chance to look "normal". Although I should also say, that it is much more important to me that my child will grow up to be an extrordinary person by all standards than to just possess a "normal" appearance by the standards of society. With such a caring parent, I'm betting your little girl is a beautiful person by any standard.

Corinne's advice for contacting Dr. Waner is the best and Corinne is a sort of ambassador for Dr. Waner's office to parents. She is a great resource and a wonderful mom who encouraged us so much when we were seeking treatment for our daughter. If you can't get any reply from Dr. Waner's office, do talk to Corrine - she can help.

Be aware that it will take some time and persistence to get a response from Dr. Waner's office. It isn't because they are indifferent, it is because they are literally swamped for pleas for help. I know Dr. Waner would contact every parent personally if he could. He cares intensely about his patients. It often takes me a couple of weeks and one or two reminder e-mails to get a response to a question from Dr. Waner's office. Give Esma several days to respond (she is perpetually buried in e-mails), and then try again if you haven't heard from her. I think they may be exceptionally busy right now because they just recently moved their clinic office. I'm not intending to discourage you, but to just be patient and to not give up.

My daughter had some intensive experience with OK-432 and it is a very good option for some children. My daughter has a mixed macrocystic/microcystic LM had a partial, yet significant response in the macrocystic portion of her LM. The microcystic portion had to be dealt with surgically. It is not yet approved by the FDA and is still in clinical trials. The main center for the trial is out of the University of Iowa. However, OK-432 does not work in microcystic LM. If your daughter's LM is primarily involving her tounge, it is most likely microcystic, but should be confirmed by a vascular specialist. The Ask the Surgeon link on this site might be helpful to you. Dr. Levitin is Dr. Waner's partner and through this site you can e-mail him. In my experience, he has been very prompt with his replies and he is a wonderful surgeon.

While my daughter's LM is very different from your daughter's, I am part of a LM support group that has many wonderful parents who have children with LM's involving the tounge. They are incredible people and I know they would gladly share their stories and support. Feel free to join us at: http://health.groups.yahoo.com/group/lmsupport/

As for your last question, while I do think it is important to accept and love our kids just as they are, Its not wrong to hope. If no one ever dared to hope that something could be done, this board wouldn't be here. And it just so happens that Dr. Waner specializes in this particular brand of hope. I think you are on the right track in seeking his opinion. If something can be done, he will know.

Blessings to your family,

Michelle (Jacqui's Mom)
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