Klippel-Trenaunay-Weber Syndrome Support Group

Hello, I would first like to start off by saying this is a amazing site.I would like to first ask is KT the same as KTW? My 2 year old nephew was diagnosed with a severe case of KTW Back in August of 2007. In the past few months his situation has become increasingly worse. He has been diagnosed to have malformed Veins, Hermanigomas, and G.I. bleeding and the strawberry birthmark. Which to my understanding is the three triads of KTW. He also has anemia which seems to be playing a role in all this as well.
He has the malformed veins and cherry in his left leg and has the hermangiomas through his body but the main ones are in his left leg,pelvic area and butt at first it seemed that something could be done for him but then they started to do mri and other test and discovered the ones that are in his leg and pelvic area are actully connected so amputation would have to be all the way to his pelvic so they said that is out of the question because even if they were to do it would not really guarantee any positive results because of the fact that he has other ones loacted through out his body not only that though I aint sure if this is normal but he also said that the hermagiomas are connected to the veins.

Recently we started to see blood when he would use the bathroom so we took him to the hospital he was released but it seemed as though they released him because nothing could be done for him at the time because a mri was scheduled for him but then canceled because he is to weak at this point in time. and it seems that lately he has begun to start to feel pain as he sleeps because he wakes up crying on a nightly basis.

We are currently seeing Dr Amjad in the miami area and he says he is in constant communication with Dr. Mulliken because at first we were told that we would have to go to Boston to have him treated but as time progressed and things seemed to get more complicated we were told that Dr Mulliken said that at this point in time nothing could realy be done for him up there either and would have to wait until he gets older. So his case has been pretty much at a stand still because they said he was to weak to do anything his normal peditrician is totally n the dark about this syndrome We took him for a check up because of the fact that his hermangioma on his butt has like blood under the skin and she actually told us it could be a diaper rash.

So right now he is wearing the compression garmets but it doesnt seem to be doing much help when we took him to see Dr amjad because of the pain he seems to be in he told us that he would rather not do a mri on him because of how weak he is but would have to start to consider doing vein treatment in the form of some type of injection which is scholeotherapy or something like that My concerns are that if he is to weak to do a mri then wouldnt he be to weak to do the medical vein treatment we were even told that this procedure may not even help him because of how malformed his veins are and the fact that the tumors are actually connected I have done some research and it seems to be a long and painful treatment. I would rather not put him in that kind of pain right now if it may not even help him.

So I guess what I am trying to ask anyone that is willing to help after rambling on for like ever is that does anyone know of maybe any other treatments or doctors we can talk to or has anyone had a situation like this I am so confused about all this seems like its just a waiting game

Thank you ahead of time

I can be imed or emailed at Bionic030885@aol.com

any advice would be apreciated
Posted on 01/25/08, 11:01 pm