[LCC]

I'm new to the site and still figuring things out. My son was diagnosed with Klipple-Traunay- Webber syndrome and I would like to know how other families have been effected by this condition. Thanks!!

[QueenAngie]

Welcome to the board, LCC!

Am certain that your son is adorable.

No help from me with this particular diagnosis, but another friend
will be able share.

Wishing you all the best!

[mommartin]

Don't have any advice but just wanted to welcome you and suggest you check out the other threads about conditions and such which someone who has KTW might check. good luck.

[songbirdxx]

Hi lcc
If it is ok with yourself, would you mind telling us something about ktw,so those of us who have never heard of it, may offer some support and advice, if we can be of any help at all,along with fellow parents who also have children with ktw.

[LCC]

It's clinical name is Klipple-Traunauy- Weber Syndrome. (I think I spelled that right) It's basically a condition that causes blood vessels to grow in a mass group, usually on the arms or legs. This large group of vessels cause the arm or leg to grow at a faster pace than the other limb. It was described to me as having two plants. The plant that has more water and food will grow faster than the other. I have discovered recently that there are other problems that can occur with this condition such as, bleeding and if the length discrepancy becomes great, there could be problems with the spine. My son hasn't hit any major growth spirts yet, so right now there is only a minor difference. My concern is the future and what to expect.

[erinellakal]

Thanks for the explanation. I had heard of it, but couldn't remember what it was. I am sorry I don't have any experience with the syndrome. I hope someone on families can offer some advice.
How old is your little boy?