Shelley007
Dec 3, 2004, 10:01 PM
Well, hello there. My 14-year old daughter was recently diagnosed with primary lymphedema. She was stung by a bee in the arch of her right foot last summer and a slight swelling continued for several weeks. During that time, she started the fall volleyball schedule. Due to the continued inflammation, we went to the pediatrician and he put a wrap on her ankle. By the next morning, her entire leg had swollen. I was surprised, but knew right away it was lymphedema.
My mother has suffered from the disorder for about the past 25 years. She had a blood clot in her right leg in her early forties that developed into lymphedema. We thought it was the secondary form. Thanks to my mom, we were able to start treatment even before the lengthy process of diagnosis had completed. We saw several pediatricians (none had ever seen this before), a pediatric allergist, attended a pediatric dermatology clinic at Oregon Health Sciences University (about 30 physicians), underwent a lymphoscinitgraphy (ouch) & finished up at a vascular anomalies clinic. Yes, she does have the disease. This is a challenge, as we all know. My daughter is very slender, 5'10" & 120 lbs., and very pretty. Fortunately, she is also beautiful on the inside, so I know she will be okay (meaning, we will make the best of it).
We practice MLD & wrap almost nightly. She is also receiving treatment from a liscensed massage therapist trained in the Vodder method. So far, things are going as well as possible.
I am so interested in hearing from parents of adolescents living with lymphedema. I honestly only know my mom & daughter. It would be so helpful to know that there are other families like us. We are not overweight. We just have less lymph nodes in the right leg. Is there anyone out there who is experiencing this nightmare too? Your stories would be appreciated.
Best Regards,
Shelley
My mother has suffered from the disorder for about the past 25 years. She had a blood clot in her right leg in her early forties that developed into lymphedema. We thought it was the secondary form. Thanks to my mom, we were able to start treatment even before the lengthy process of diagnosis had completed. We saw several pediatricians (none had ever seen this before), a pediatric allergist, attended a pediatric dermatology clinic at Oregon Health Sciences University (about 30 physicians), underwent a lymphoscinitgraphy (ouch) & finished up at a vascular anomalies clinic. Yes, she does have the disease. This is a challenge, as we all know. My daughter is very slender, 5'10" & 120 lbs., and very pretty. Fortunately, she is also beautiful on the inside, so I know she will be okay (meaning, we will make the best of it).
We practice MLD & wrap almost nightly. She is also receiving treatment from a liscensed massage therapist trained in the Vodder method. So far, things are going as well as possible.
I am so interested in hearing from parents of adolescents living with lymphedema. I honestly only know my mom & daughter. It would be so helpful to know that there are other families like us. We are not overweight. We just have less lymph nodes in the right leg. Is there anyone out there who is experiencing this nightmare too? Your stories would be appreciated.
Best Regards,
Shelley