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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Lymphatic Malformation of Tongue (http://birthmark.org/board/showthread.php?t=2134)

frustrated dad 10-31-2006 05:58 PM

Lymphatic Malformation of Tongue
 
Hello,
I am new to this board and in search of some help for my Daughter.

She is a beautiful, almost 16 yr old that has repeated problems with her tongue.
It started when she was around 8 yrs old with a biopsy preformed by an ENT Dr. to check out red bumps on her tongue. After the biopsy, my daughter's tongue swelled to a point where she could not close her mouth and swallow her spit. She was put on prednezone which helped reduce the inflamation. It seemed as though she would swell up when she had some sort of upper respatory illness. She has been tested for allergies and has alot of them...none associated (?) with her tongue.
Through the children's Hospital of the Kings Daughters, we realized my daughter had lympangioma of the tongue. A Dr. Waner (??) preformed the first laser surgery which seemed to help her significantly.
The laser surgery on her tongue was to reduce the amount of "buds" (clear or red fluid vessicles). This enabled her to have reduced pain and swelling of the tongue, along with the look of a normal tongue (she gets alot of questions from her schoolmates about what is wrong with her tongue).

She has had several more surgerys preformed by a different doctor that was trained by Dr. Waner. It seems the swelling and the pain are more re-occuring than ever. Everytime surgery is preformed, prednizone is prescribed to keep the swelling down. I don't like my daughter on steroids.
Recently the tongue has swelled for no reason. She had an episode last night and we currently have her on prednezone to reduce the swelling.

My Questions:
1.) How do I contact Dr. Waner ?...I feel in my heart he helps hold the key to helping my daughter out.
2.) Has anyone out there had similar experiences?
3.) What do you think about this OK-432 ? Does it work as well as they say ?
Does it have the FDA approval?
4.) Do I have my head in the sand looking for some miracle, or something that may be obtainable, or should I just do like my x-wife says...that it's all ways going to be there ?
Thank you so much for your help,
Bobby

nickbar 10-31-2006 06:07 PM

Hello. Please contact Dr. Waner's nurse Esma at Esma Paljevic [esmanp@chpnet.org] to have you questions answered about helping your daughter. Let me know if you have any problems getting a reply.

Corinne

WiTJmom 11-01-2006 03:36 PM

OK-432 does not work on micro cystic LM. If your daughter LM sort of looks like frog eggs, that is micro cystic. Lm will swell when child is going though hormone changes, an illness or stress.Also sorry to say LM is a life time thing there is no cure just very good management. If you like I have a few emails to other families, you can email me at wibearmom@yahoo.com Lora

sweet pea 11-04-2006 10:59 PM

You can email dr. waner through this website. I have LM myself though its not on my tongue. Unfortunately LM will never go away, but you should try and get treatment.

jacquismom 11-05-2006 09:23 PM

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)

frustrated dad 11-06-2006 07:56 PM

Thank you all for your responses. I will not loose hope for my daughter, and will be patient in hopes of contacting Dr. Waner.

My heart goes out to you all and may God bless you and your children.

Bobby

nickbar 11-06-2006 08:36 PM

Gosh Michelle, may I call on you to lift me up on those days I am feeling blue. WINK WINK. Thank you though for your kind words and glad to help.

This site gave me so much strength and information when I first joined and now I feel honored to help anyone I can.

Bobby, Good luck and just feel free to email me anytime if you are having problems getting thru to Waner. (yes, Levitin is awesome...and in person such a nice person)

Corinne

jacquismom 11-06-2006 10:25 PM

Hi Corinne - You bet! Call anytime - I would be glad to return the favor for the many times you have kept me going with a kind word. I really appreciate all you do for the parents on this site.

Michelle ( Jacqui's Mom )

JeZouMaarIrisHeten! 03-25-2007 03:41 PM

Quote:

Originally Posted by WiTJmom (Post 11337)
Lm will swell when child is going though hormone changes, an illness or stress.Also sorry to say LM is a life time thing there is no cure just very good management.

I haven't read anything simulair like this before: I have an CLM (cystic lymphatic malformation), and I dind't knew that stress and hormones can let the (C)LM shrink or grow.

I currently been treated with the Pulsed Dye Laser for my CLM, and it works great. My CLM is on my belly. Every body (and everybody) is different, and will react different. So it depends on how large the LM is.

@Bobby & daughter (she's my age): Good luck!

LilyGrace23 06-13-2008 02:11 PM

don't give up hope. I fought for 2 years to take me serious and it was well worth it. My son has a very rare form of lymphatic malformations. his is all throughout his chest, near his lungs, and throughout his ribs, he also has 2 tumors in his spleen. I know it is frustrating, there are not a lot of answers but I know that support and kind words can do wonders for the soul. I just found this site today and am overwhelmed right now. I do have the number to the vascular anomolie clinic at Boston children's hospital. they are very kind and will help you in any way they can....They specialize in lymphatic malformations if you have any questions please feel free to ask or you just need support... 617-355-5226


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