Lost for answers

Hello. I'm new to this board. My name is Julie Sadler and my daughter, Kasey, was born with Lymphatic Malformation of the tongue. She is 7 years old and has had 9 surgeries. She has had 2 done by Dr. Waner. The last one he performed was in March of 2006. The others were done by Dr. Werkhaven at Vanderbilt Children's Hospital in Nashville, TN. Dr. Waner treated us like we were family and made us feel right at home. I told them I wish I could move to NY. I would love to find someone who I could talk to about this that might be older and could kind of tell me what to expect. I know that when she gets sick, it grows. Also, as she grows, it grows. I have also heard that when she starts having harmones it could get worse. I would like to know if it will get more painful. I know that surgery is the only way to take care of it with steroids, but the steroids make her stomach hurt. The doctor has her on all kinds of medicine already to help, but she still hurts. I just would like to talk to someone who can tell me things that I need to know that can help me to help her when she asks questions.

[missy]

Hi Julie,

This is something I know NOTHING about.

However, go here:
http://birthmark.org/ask_the_parents.php

and in the drop down menu, chose Lymphatic malformations.

Our Parent Volunteer to answer questions is a father named Greg. While his son is not quite the same age as Kasey, he might have some encouragment to offer. Additionally, he might be able to tell you where to find the answers to the questions you have.

Also, try http://birthmark.org/experts.php and ask the Lymphatic Malformation expert if he knows of any online (or offline) support resources that you could access.

Try the MSN group... I know if you go to
http://groups.msn.com/
you can find one that deals only with LM's. If you can't find it, let me know... I know that Corinne knows where it is. I'll have to ask her.

You might try looking around Yahoo Groups as well. If there isn't one, start one!!

Post soon and let me know if you find someone to talk to!

Missy

There is a support group on yahoo, LMsupport we have over 100 members. Lora

[nickbar]

If you go to the msn group Missy mentioned. http://groups.msn.com/vascularbirthm..._whatsnew.msnw and on the menu look under malformations...I have everyone listed by type... you can then post a message to a specific person you found on that list or click on their user name and see if they've added their email address to their profile page. If you have any questins, please feel to contact me.

[linda6969]

My daughter has this also, she's 2 years old. I know this sounds stupid but try Castor oil Packs, I'm desperate at this point and will try anything. Google that, it's interesting. I'm not sure if she qualifies for the OK 432 injection. Take Manuka honey, or aloe vera, or coconut oil for her stomach. It may ease the pain. Look up electra medicine. I don't know sweety, it sucks you and your daughter have to go through this. God Bless you.
My daughter has had a recent recurrence.