What is Turner Syndrome
Turner syndrome encompasses a number of chromosomal abnormalities, of which monosomy X, is the most common. It occurs in 1 out of every 2,500 female births[1]. Instead of the norma...
Join Now
|
How do I deal with Lymphedema?
|
Watch this |
| View More Posts Ignore |
My beautiful 5 yr old active little girl has TS,diagnosed at birth..she has had open heart surgery to repair a coarchtation and a valveaplasty to repair a pulmonary stenosis..oral surgery,numerous tubes in her ears...Hormone therapy, reflux,problems with weight gain...the standard things that come along with TS...Well after sitting over at Children's hospital San Diego all day yesterday with a swollen left foot..that mind you is three times if not more bigger then it's normal "Little FAT foot" state..My Maysen calls it her "Little FAT foot" lol.. They diagnosed her with Lymphedema,which i know that it comes along with the TS,but her foot has never been this big and she has never had such difficulty walking on it nor has she ever had it be painful to try to put it down all the way, she walks with it turned in and on her tippy toes...it is very sad to see...they did blood work and X-rays..and sent us home with instructions to elevate and give benadryl which all this has already been done since the start of this 5 days ago and it continues to swell NO change except for some more swelling and pain....I feel horrible that I have NO answers for her and that I can't wave a magic wand and "POOF" she is back to feeling better...now her pediatrician is trying to find out who the right speacialist is for this job of fixing Maysen..the hospital said we need to be referred to Loma Linda Children's which is great thats where all her others are,we have NO idea what the specialist in this would be,and right now we are at a loss on how to make her comfortable at the moment until we can find this "magic" speacialist and we can actually get in to see them and they can make her leg just back to "Little FAT foot"..So if there is anyone out there that is dealing with or has dealt with this and knows how to make it right again or even a little more comfortable for her I would be very very very thankful, I feel soooo helpless,that I can't just kiss this "owie" and make it better for my little girl.
Posted on 10/13/09, 02:10 pm |
| 2 Replies | Add Your Advice |
| View More Posts Ignore |
I have no idea.
I was only diagnosed in June 09, and I'm 27. I have the mosaic form at just over 30%. I wonder if you might be able to enquire with the Dr's about the possibility of massage to encourage the lymp system to drain as it should. I trained as a massage therapist about 10 years ago, and it is not at all suitbale for all medical conditions so I would urge you to ge tthe green light from the DR. And perhaps you can then do some efflurage, or gentle stroking of the entire limb in the direction toward the torso. From the point of swelling, up the claf muscle and around the back of the knee and up the entire thigh, just a gentle stroke, no real pressure at all. But don't forget to okay it with the Dr. I'm so sorry you are all going through this, I cannot imagine how you must feel. I wish you all the best and the vision to see better days ahead. Jo X 
|
|
|
|
||
| View More Posts Ignore |
Also if they do okay massage, then do both limbs equally to maintain ballance on the help you might be able to give.
|
|
|
|
||
| Add Your Advice |
