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.