Ok SCARY!!!!!! I can hardly believe that my beautiful angel has a syndrome. And it seems to be one that has a vast array of levels. The doctor did say that based on a scale of 1-10 hers is probably a 1 or 2 so that is good news. Here is the really wierd thing.....I am back teaching in the mornings because we had to release a teacher from her position (long story that I will get to another time) anyway, the woman that is teaching in the afternoon, her grandson has the same diagnosis. Her daughter called me tonight and told me about a support group and gave me her phone number and some other very helpful advice. The one thing she did say is that Mayo and a clinic in Boston are the only two hospitals that work with this syndrome so I guess it is good that I live in Minnesota.
I must say that this is all a little overwhelming at the moment but hopefully as we all learn more and get more educated, things will not seem as overwhelming.
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Grandma M is concerned but glad that you and D are in Minnesota where you can go to Mayo to start her treatment. One day at a time Kim! Our prayers and love are with you. Love Mom & Dad "M"
ReplyDeleteI found your blog doing an online search. I am 37 and have klippel trenaunay syndrome. My port wine stain is primarily on the right side of my body, with my right leg being the most affected. That leg has always been fatter and slightly longer. I do suffer from leg pain, neuropaty and lymphedema. I have varicose veins as well. I led a pretty normal life. My issues did not start until I hit puberty. I do have arthritis in my right knee and hip. I am on facebook and have a KT group on there for adults with KT. Please join the KT facebook groups, because you will meet a lot of wonderful folks from all over the world with KT.
ReplyDeleteMy daughter has KT, and like yours it is only mild.
ReplyDeleteHers is to her arm, and she is 5.5.
Just wanted to let you know that it isnt all doom and gloom. Check out my blog if you want to see how she is going.